ISSN 2712-472X GIVE DAJ Life a chance Življenju priložnost Donorska in transplantacijska dejavnost Donation and transplantation activity v Sloveniji v letu 2019 in Slovenia in 2019 Daj življenju priložnost - Donorska in transplantacijska dejavnost v Sloveniji v letu 2019 Urednici: Danica Avsec, Barbara Uštar Avtorji: Barbara Uštar, Jana Šimenc, Andrej Gadžijev, Gorazd Cebulc, Jože Jakovac Lektorica: Nives Mahne Cehovin Oblikovanje in prelom: Vesna Žerjal Tisk: Cicero Begunje, d.o.o. Kraj in leto izida: Ljubljana, 2020 Založba: Zavod RS za presaditve organov in tkiv Slovenija-transplant Avtorske pravice: Zavod RS za presaditve organov in tkiv Slovenija-transplant Naklada: 250 izvodov Publikacija je bila izdana s pomocjo javnih sredstev iz proracuna Zavoda RS za presaditve organov in tkiv Slovenija-transplant. Publikacija je brezplacna. ISSN 2712-472X Give life a chance – Donation and transplantation activity in Slovenia in 2019 Editors: Danica Avsec, Barbara Uštar Authors: Barbara Uštar, Jana Šimenc, Andrej Gadžijev, Gorazd Cebulc, Jože Jakovac Translation: Nives Mahne Cehovin Language editing and proofreading: Murray James Bales Layout and design: Vesna Žerjal Printed by: Cicero Begunje, d.o.o. Slovenia: Ljubljana 2020 Original title: Daj življenju priložnost - Donorska in transplantacijska dejavnost v Sloveniji v letu 2019 Publisher: Institute for Transplantation of Organs and Tissues of the Republic of Slovenia Slovenija-transplant Copyright: Institute for Transplantation of Organs and Tissues of the Republic of Slovenia Slovenija-transplant Printed in 250 copies This publication is funded from public funds – budget of Institute for Transplantation of Organs and Tissues of the Republic of Slovenia Slovenija-transplant. This publication is free of charge. Uvodne besede V letni publikaciji Daj življenju priložnost predstavljamo statisticne podatke in izbrane presežke v donorski in transplantacijski dejavnosti v letu 2019. Podatki so pregledno umešceni v mednarod­ni kontekst in širši casovni okvir, kar omogoca boljše razumevanje uspešnosti nacionalnih pro-gramov. V preteklem letu vse države v Eurotransplantu beležimo rahle padce v donorskih in transplan­tacijskih programih. Reorganizacija v alokaciji organov je nepricakovano negativno vplivala na manjše države, kot je Slovenija. Upad je bil najbolj opazen v programu presaditve ledvic, a pred­vidoma bodo v zacetku letu 2020 pomanjkljivosti v sistemu alokacije popravljene. Kljub temu pa imamo navdušujoce uspehe v programih presaditev pljuc in src. Prav tako se z 21,14 darovalca na milijon prebivalcev še vedno uvršcamo v zgornji vrh držav v posmrtnemdonorskemprogramu. Z vsakim primerom darovanja in presaditve vedno znova jasno uvidimo, da je zdravljenje s pre­saditvijo zelo kompleksna dejavnost, ki jo lahko zagotavljamo le s skupnim, uigranim in celovi­tim pristopom. Zahvaljujem se vsem donorskim centrom, transplantacijskim ekipam, vidnejšim in manj vidnim clenom ter vsem darovalcem, ki so sodelovali in/ali sodelujejo v donorskem in pre­ jemniškem nacionalnem programu. Vabim vas k branju publikacije. Namenjena je najširši zainteresirani javnosti. direktorica zavoda Slovenija-transplant in odgovorna zdravnica za donorsko dejavnost Kazalo 3 Uvodne besede 6 Slovarcek temeljnjih izrazov 8 Zavod Slovenija-transplant 10 Presežki in zaznamki leta 2019 14 Kljucne številke leta 2019 15 CVRSTI ORGANI 16 Nacionalni cakalni seznam za presaditve organov 19 Število umrlih darovalcev 26 Register opredeljenih oseb glede darovanja organov in tkiv po smrti 28 Odstotki odklonitev pri pogovoru s svojci 30 Delovanje donorskih centrov 40 Pridobljeni cvrsti organi za namen zdravljenja 44 Presajeni cvrsti organi 50 Uspešnost slovenskih programov za presaditve organov 55 TKIVA IN CELICE 56 Presaditve krvotvornih maticnih celic 58 Program pridobivanja in presaditve roženic 60 Ostala tkiva in celice 64 NEŽELENI DOGODKI IN REAKCIJE 66 OBJAVE IN PREDAVANJA NA KONFERENCAH 70 VIRI Table of contents 73 Introductory words 74 The Slovenija-transplant Institute 76 Achievements and highlights of 2019 80 Key statistics for 2019 81 SOLID ORGANS 82 National waiting list for organ transplantation 85 Number of deceased donors 92 Register for donation declarations 94 Percentage of donation refusals 96 Operations of the donor centres 106 Procured solid organs for the purpose of medical treatment 110 Transplanted solid organs 116 The successfulness of Slovenian organ transplant programmes 121 TISSUES AND CELLS 122 Transplantation of haematopoietic stem cells 124 Cornea procurement and transplantation programme 126 Other tissues and cells 130 ADVERSE EVENTS AND REACTIONS 132 PUBLICATIONS AND ORAL PRESENTATIONS 135 LITERATURE Slovarcek temeljnih izrazov BOLNIŠNICNA KRVNA BANKA: enota, ki v bolnišnici shranju­je in razdeljuje kri ter krvne komponente in opravlja pred­transfuzijsko testiranje ter bolnišnicne transfuzijske dejav­nosti. Za zbiranje krvi torej ni pooblašcena. BOLNIŠNICNI TRANSPLANTACIJSKI KOORDINATOR: zakon dolo- ca nacin imenovanja, naloge bolnišnicnih koordinatorjev in pravilnik o koordinatorjih. Naloge bolnišnicnih transplanta­ cijskih koordinatorjev so: organizacija in koordinacija dela na vseh podrocjih transplantacijske dejavnosti v bolnišni­ci, od odkrivanja možnih mrtvih darovalcev do organizaci­je in koordinacije odvzemov v bolnišnici ter pospeševanje programa pridobivanja organov in tkiv za presaditev. Delo opravljajo zdravniki specialisti, ki so pridobili dodatna zna­nja o vseh podrocjih transplantacijske dejavnosti v bolnišni­ci oz. donorskem centru. CENTRALNI TRANSPLANTACIJSKI KOORDINATOR: zdravnik z do-datnimi znanji, ki organizira in koordinira transplantacijsko dejavnost od zaznave možnega darovalca do odvzema. Centralni transplantacijski koordinatorji so v pripravljenosti 24 ur na dan vse dni na leto. CAKALNI SEZNAM (PREJEMNIKOV): zbirka podatkov zapored- no vpisanih pacientov, ki cakajo na presaditev z namenom zdravljenja. Indikacije za presaditev so za vsak organ/tkivo/ celico specificne. DAROVALEC: oseba, ki daruje del telesa za namen zdravlje­ nja, ne glede na to, ali do darovanje pride za casa življenja ali po njeni/njegovi smrti. DAROVANJE: darovanje dela telesa, namenjenega za zdrav­ ljenje s presaditvijo. DEJANSKI UMRLI DAROVALEC: aktiven darovalec, od katere­ga je bil presajen vsaj en organ. DODELJEVANJE: postopek, po katerem se izbere najustreznej­ šega prejemnika. DONORSKA BOLNIŠNICA ALI CENTER: javnozdravstveni zavod ali enota tega zavoda, ki izvaja dejavnost pridobivanja de­lov telesa za namen zdravljenja s presaditvijo. HUD NEŽELEN DOGODEK: kateri koli neželen ali nepredviden dogodek v zvezi s katero koli stopnjo postopka darovanja do presaditve, ki lahko povzroci prenos nalezljive bolezni, smrt, ogrozi življenje, povzroci invalidnost ali nezmožnost za delo, katerega posledica je hospitalizacija ali obolevnost, ali ki podaljša hospitalizacijo ali obolevnost. HUDA NEŽELENA REAKCIJA: nenameren odziv, vkljucno s po­javom prenosljive bolezni, pri živem darovalcu ali prejemni­ku, ki bi lahko bil povezan s katero koli stopnjo postopka od darovanja do presaditve, ki je smrten, smrtno nevaren, ki povzroca invalidnost ali nezmožnost za delo, ali katerega posledica je hospitalizacija ali obolevnost ali ki podaljša ho- spitalizacijo ali obolevnost. INTENZIVNO ZDRAVLJENJE/INTENZIVNA NEGA: zdravljenje, ki zahteva hitro odzivno diagnostiko, terapijo, nego in stalni nadzor življenjskih funkcij bolnika ponavadi v enoti za inten­ zivno zdravljenje. MOŽEN UMRLI/MRTVI DAROVALEC: oseba, katere klinicno sta­nje kaže na verjetnost, da izpolnjuje merila za možgansko smrt. NACIONALNA IDENTIFIKACIJSKA ŠTEVILKA DAROVALCA OZI­ROMA PREJEMNIKA: identifikacijska oznaka, ki jo v skladu z nacionalnim sistemom identifikacije darovalcu ali prejemniku dodeli Slovenija-transplant in služi kot povezovalni znak, prek katerega se sledi darovalcu in prejemniku organa, zlasti pri iz­menjavi podatkov med donorskimi centri, transplantacijski- mi centri in drugimi državami clanicami Evropske unije. PRIMEREN UMRLI/MRTVI DAROVALEC: medicinsko ustrezna oseba, pri kateri je bila ugotovljena smrt na podlagi nevrolo­ških meril, glede na relevantno zakonodajo. SLEDLJIVOST: možnost, da se najde in identificira organ v vseh fazah preskrbe z organi ali unicenja, vkljucno z mož­nostjo, da se identificirata darovalec in donorski center, po­išcejo prejemniki pri transplantacijskem centru ter identifici­rajo vsi pomembni neosebni podatki v zvezi s proizvodi in materiali v stiku z organom. STOPNJA ODKLONITVE: odstotek odklonitev svojcev oz. oseb, ki so blizu umrlemu, za darovanje po smrti. STOPNJA ZAVRNITEV: odstotek zavrnitev presadka pri preje­mniku. TRANSPLANTACIJSKA DEJAVNOST: zdravstvena dejavnost, ki vkljucuje postopke darovanja, pridobivanja, testiranja in ra­ zdeljevanja organov ter darovanja, pridobivanja, testiranja, predelave, konzerviranja, shranjevanja in razdeljevanja tkiv in celic za potrebe zdravljenja s presaditvijo. TRANSPLANTACIJSKI CENTER: javnozdravstveni zavod ali eno­ta tega zavoda, ki izvaja dejavnost zdravljenja s presaditvi­jo organov. TRANSFUZIJSKI CENTER: organizacijska enota, ki je v bolniš­nici odgovorna za zbiranje krvi, testiranje, predelavo zbra­ne krvi v krvne komponente in njihovo shranjevanje. Izvaja predtransfuzijsko testiranje in bolnišnicne transfuzijske de­javnosti ter bolnišnice in druge porabnike oskrbuje s krvjo in krvnimi komponentami. TRANSFUZIJSKI ZAVOD OZIROMA ZAVOD RS ZA TRANSFUZIJSKO MEDICINO V LJUBLJANI: na državni ravni odgovoren za stro­kovno raven preskrbe s krvjo in krvnimi pripravki ter pove­ zovanje transfuzijske medicine z bolnišnicno dejavnostjo. Zavod usklajuje vse dejavnosti v zvezi z izbiro krvodajalcev, zbiranjem, testiranjem, predelavo, hrambo in razdeljevanjem krvi ter krvnih pripravkov,klinicno rabo krvi in nadzoromnad težkimi neželenimi dogodki oziroma reakcijami v zvezi s transfuzijo krvi. Zavod RS za transfuzijsko medicino na dr­žavni ravni usklajuje in povezuje mrežo bolnišnicnih transfu­zijskih oddelkov in bolnišnicnih krvnih bank, vodi enoten in-formacijski sistem, strokovno izobraževanje in razvojno-ra­ ziskovalno dejavnost ter sodeluje z mednarodnimi organi­ zacijami, zvezami in sorodnimi zavodi v drugih državah. Zavod Slovenija-transplant Javni zavod Republike Slovenije za presaditve organov in tkiv Slovenija-transplant je od leta 2002 osrednja nacionalna strokovna ustanova, ki povezuje, koordinira, pospešuje ter nadzira donorsko in transplantacijsko dejavnost v Sloveniji. V zavodu Slovenija-transplant je centralna koordinacij- ska pisarna nacionalne transplantacijske mreže, ki je bila ustanovljena leta 1998. Nacionalno mre­žo sestavlja enajst donorskih bolnišnic po Sloveniji, Center za transplantacijsko dejavnost v UKC Ljubljana in Center za tipizacijo tkiv, ki deluje v sklopu Zavoda RS za transfuzijsko medicino. Naci­ onalna mreža omogoca delovanje donorskega in prejemniškega programa ter zagotavlja, da ima­jo dostop do zdravljenja s presaditvijo vsi, ki ga potrebujejo. Mreža deluje nepretrgoma, zato so strokovne ekipe v pripravljenosti 24 ur na dan, vse dni v letu. Od leta 2000 je Slovenija vkljucena v neprofitno organizacijo za izmenjavo organov in tkiv Euro-transplant. Z izpolnjevanjem zahtevnih vstopnih pogojev se je prva iz regije prikljucila veliki skupi­nipetihuspešnihdržav na podrocju zdravljenja s presaditvijo, t. j. Nemciji, Avstriji, Belgiji, Luksem­burgu in Nizozemski. Od leta 2002 je Slovenija-transplant nosilec pogodbe z Eurotransplantom. Eurotransplant danes združuje 8 držav in prek 137 milijonov prebivalcev, sedež ima v Leidnu na Nizozemskem. Clanstvo je pomembno za naše bolnike,saj so se s prikljucitvijo bistveno izboljša­le možnosti preživetja in izidi zdravljenja s presaditvijo, predvsem v visoko urgentnih, življenjsko ogrožajocih stanjih, kot sta akutna odpoved delovanja srca in jeter, ter v drugih posebnih primerih (npr. otroci, hipersenzibilizirani bolniki). S sodelovanjem so se tudi obcutno zmanjšali cakalni sez­nami, nacionalni transplantacijski programi so se razmahnili, izvajati smo zaceli kombinirane pre­saditve. Predvsem pa smo lahko omogocili optimalnejšo tkivno skladnost med darovalcem in pre­ jemnikom. Nekateri bolniki zaradi tkivne neskladnosti ustreznega organa v Sloveniji sploh ne bi docakali. V letu 2020 bomo z vec dogodki obeležili pomembno 20. obletnico uspešnega sodelo­vanja z Eurotransplantom. ZAVOD SLOVENIJA-TRANSPLANT Zavod Slovenija-transplant se od ustanovitve naprej nenehno razvija v skladu s priporocenimi mednarodnimi smernicami. Stremimo k ustvarjanju izobražene in motivirane strokovne javnosti ter z vecplastnim komuniciranjem vztrajno povecujemo zaupanje v transplantacijsko medicino med splošno javnostjo. Preko clanstev v mednarodnih strokovnih odborih in s sodelovanjem v evrop­skih projektih smo tesno vpeti v mednarodno okolje, tudi kot aktivni soustvarjalci strategij, razvoja in izobraževanja strokovnjakov v donorski in transplantacijski dejavnosti na mednarodnem pod-rocju. Ostajamo mednarodno prepoznan in zgleden primer za nacin organizacije in vodenja nacio­ nalnega donorskega programa. Pri urejanju in vodenju podrocja pridobivanja in uporabe delov cloveškega telesa za namen zdra­vljenja v Slovenija-transplantu dosledno upoštevamo zakonodajo, evropske direktive in sprejete mednarodne konvencije. Skrbimo za ustrezno posodabljanje nacionalne zakonodaje in strokovnih protokolov. Ob uvajanju sprememb vkljucujemo soglasno sprejete odlocitve stroke, kriticne druž­bene premisleke ter nacela medicinske etike in deontologije. Slovenija-transplant od ustanovitve vodi prim. Danica Avsec, dr. med, svetnica in odgovorna zdravnica za donorsko dejavnost. Zavod deluje pod okriljem Ministrstva RS za zdravje. V letu 2019 je bilo v organizaciji devet redno zaposlenih, v donorskem programu pa sta sodelovala 102 pogodbena sodelavca. Kljucne smernice delovanja zavoda so: samozadostnost I enakost in varnost za bolnike I opti­malna ucinkovitost I kakovost I sledljivost I profesionalnost I nekomercialnost I transparentnost I prostovoljno darovanje I preprecevanje zlorab. www.slovenija-transplant.si @SloTransplant Presežki in zaznamki leta 2019 10.000 vpisanih v registru opredeljenih oseb V nacionalnem registru opredeljenih oseb glede darovanja organov in tkiv po smrti je bilo konec leta vpisanih skoraj 10.000 ljudi. Že v prvih dneh januarja 2020 smo številko presegli. V zacetku januarja je bilo tako opredeljenih 10.137 ljudi, kar je 0,57 % prebivalcev, starejših od 15 let. Tudi v letu 2020 bomo nadaljevali z aktivnostmi ozavešcanja javnosti in spodbujanjem k opredelitvi, s poudarkom na elektronski poti prek portala www.e-uprava.si. Možnost elektronske oddaje izjave za ali proti darovanju prek spletnega portala eUprava smo zaradi poenostavitve postopka vzpo­stavili v novembru 2018. Naslednje leto se je po tej poti opredelilo 566 oseb, kar predstavlja slabo polovico vseh podanih opredelitev v letu 2019. Navdušujoci rezultati v nacionalnem programu za presaditev pljuc v UKC Ljubljana V letu 2019 je odlicna multidisciplinarna ekipa v nacionalnem programu zdravljenja s presaditvijo pljuc dosegla izjemne rezultate. Po lanskoletnem ponovnem zagonu programa v transplantacij­skem centru UKC Ljubljana so uspešno opravili kar deset zahtevnih presaditev obeh pljucnih kril, v enem primeru pa je bila presaditev za slovenskega pediatricnega bolnika opravljena še v uni-verzitetni bolnišnici na Dunaju. V vseh primerih obravnavo bolnikov pred presaditvijo pljuc ter sle­denje po njej venomer opravljajo na pristojnih oddelkih UKC Ljubljana. Vsem vpletenim cestitamo za vrhunsko opravljeno delo! 100-odstotno soglasje svojcev in 10 aktivnih darovalcev v UKC Maribor Ekipa v donorski bolnišnici UKC Maribor je v letu 2019 s trinajstimi možnimi in desetimi aktivnimi darovalci nadaljevala z dobrim delom v nacionalni donorski mreži. Od osmih (dejanskih) daroval­cev je bil presajen vsaj en organ. Nadpovprecno izstopajo tudi po 100-odstotni stopnji soglasja svojcev umrlih za darovanje. Vsem sodelavkam in sodelavcem v donorskem programu se zahva­ ljujemo za zavzetost in cestitamo za kakovostno opravljeno delo! Zakljucen EU projekt EUDONORGAN Jeseni 2019 smo uspešno zakljucili sodelovanje v 3-letnem evropskem projektu EUDONORGAN (Training and social awareness for increasing organ donation in the European Union and neighbo­uring countries), ki ga je s posebno pogodbo financirala Evropska komisija. Dosežen je bil namen projekta, to je spodbujanje pozitivnega odnosa družbe do darovanja organov, multidisciplinarno in regijsko povezovanje vseh deležnikov in primerjava dobrih praks. Zavod Slovenija-transplant jebil poleg organizacij iz Španije, Hrvaške in Italije kljucen partner v projektu v aktivnostih izobraže­vanja zdravstvenega osebja in ozavešcanja splošne javnosti. V letu 2019 sta bila pod vodstvom Slovenija-transplanta organizirana interdisciplinarna simpozija o darovanju organov v Budimpešti in Stockholmu. Aktivno smo sodelovali tudi na osrednjem seminarju v Evropskem parlamentu v Bruslju pri naslavljanju politicnih avtoritet. Pokazalo se je, kako pomembno je mednarodno po­vezovanje na podrocju spodbujanja darovanja organov. Skupne akcije namrec prinesejo bolj upo­rabne in vidne rezultate, ceprav je še vedno prevec samostojnih aktivnosti na lokalni ravni, katerih ucinki se kasneje porazgubijo. O donorski medicini na mednarodnem simpoziju intenzivne medicine S tematskim sklopom o donorski medicini smo sodelavci Slovenija-transplanta sodelovali na 28. mednarodnem simpoziju intenzivne medicine, ki je potekal 1. junija na Bledu v organizaciji Slo­venskega združenja za intenzivno medicino. S kolegi s Poljske in Hrvaške smo predstavili aktu­alne smernice dela, kljucne ovire za transplantacijsko dejavnost v enotah intenzivne medicine in možnosti za razvoj nacionalnega donorskega programa, med drugim s programom o darovanju po cirkulatorni smrti. Izsledki raziskovalnega projekta Družbeni vidiki darovanja organov v praksi Kje so zadržki za opredelitev za darovanje, kljub temu da prek 85 % ljudi izraža nacelno podporo zdravljenju s presaditvijo? Kako spodbuditi javnost k aktivnemu opredeljevanju in govoru o daro­vanjuorganov? Kakšne strategijeozavešcanja javnosti sonajuspešnejše? To so nekatera kljucna vprašanja, na katera smo iskali odgovore v aplikativnem raziskovalnem projektu Družbeni vidiki darovanja organov (sofinancer ARRS), v sodelovanju s Fakulteto za družbene vede Univerze v Ljubljani in Nacionalnim inštitutom za varovanje zdravja. Opravljena je bila vseslovenska teren- ska raziskava o stališcih glede darovanja organov in pripravljena priporocila za komuniciranje z javnostmi (glejBerzelak, Avsec, Kamin 2019). Projekt smo uspešno zakljucili, sveže raziskovalne izsledke in dognanja pa že vkljucujemo v komunikacijske aktivnosti. Izobraževanje in certificiranje evropskih transplantacijskih koordinatorjev (CETC) Prim. Danica Avsec je v vlogi predsednice mednarodnega odbora Board of Transplant Coordina­tors (BTC), ki deluje pod okriljem evropskega združenja UEMS Surgery, v sodelovanju s turško organizacijo Turkish Transplant Foundation organizirala pripravljalni tecaj na izpit za evropskega transplantacijskega koordinatorja (CETC). Tecaj za udeležence je potekal 1. in 2. avgusta 2019 v Istanbulu. Kot predavatelja sta sodelovala prim. Danica Avsec in Andrej Gadžijev. Tecaja sta se med drugim udeležili dve slovenski kandidatki za izpit CETC in ga kasneje z odliko tudi opravili. Izpit je potekal 14. septembra v Křbenhavnu pod okriljem kongresa Evropskega združenja za transplantacijo organov (ESOT). O eticnih vprašanjih v transplantacijski medicini 7. junija je v prostorih UKC Ljubljana potekal mednarodni simpozij Eticni izzivi pri transplantaciji organov. Na simpoziju so bile izpostavljene marsikatere slabe prakse iz tujine. Z referati prim. Danice Avsec in Andreja Gadžijeva smo pojasnili prednostna podrocja Slovenija-transplanta, tudi eticne osnove in smernice, na katerih delujemo na podrocju boja proti trgovanju in uvajanju sprememb v donorskih programih. Prikazali smo, kako je z dobro organizacijo in s spoštovanjem visokih eticnih meril možno zagotoviti varno,kakovostno in transparentno transplantacijsko zdrav­ljenje. Kakršnekoli zlorabe sistema so namrec pri nas izkljucene in so kazensko preganjane. Prim. Avsec tudi aktivno sodeluje v mednarodnih telesih in s tem prispeva k pregonu nedopustnih kršenj clovekovih pravic v obliki trgovine z organi in k bolj eticni drži v globalni transplantacijski skupnosti. Cvrsti organi NACIONALNI CAKALNI SEZNAM ZA PRESADITVE ORGANOV Cakalni seznam je seznam bolnikov, ki ca­kajo na del cloveškega telesa za presadi­tev z namenom zdravljenja. Indikacije za presaditev so za vsak organ/tkivo/celico specificne. Vsi bolniki v Republiki Slove­niji imajo enake možnosti za uvrstitev na cakalni seznam prejemnikov in zagotov­ljen enak dostop do presaditve delov clo­veškega telesa. Konec leta 2019 je na pre­saditev organa cakalo 156 bolnikov, kar je najvec do sedaj, predvsem na racun po­novnega zvišanja števila cakajocih na pre­saditev ledvice, ki se je v dveh letih skoraj podvojilo. Povprecna cakalna doba je za vse organe v primerjavi z ostalimi država-mi relativno kratka. Slovenski bolniki ca­kajo na presaditev srca, jeter ali ledvice v povprecju manj kot leto dni. V letu 2019 je bilo v Sloveniji na cakalni seznam na novo uvršcenih 134 bolnikov, od tega 80 za ledvico, 27 za srce in 27 za jetra. LEGENDA Ledvica (95) Ledvica in trebušna slinavka (1) Srce (42) Jetra (17) Ledvica in jetra (1) Stanje na nacionalnem cakalnem seznamu na dan 31. 12. 2019 (aktivni cakajoci) Ledvica Ledvica in trebušna slinavka Ledvica in jetra Srce 95 1 1 42 Srce in jetra Srce in ledvica Jetra Trebušna slinavka 0 0 17 0 SKUPAJ 156 bolnikov Vir: http://statistics.eurotransplant.org/ Delež bolnikov na nacionalnem cakalnem seznamu po posameznem organu oz. kombinaciji organov v letu 2019 42 1 1 Nacionalni cakalni seznam v obdobju 2000-2019 (stanje na dan 31. 12., aktivni cakajoci) Leto Ledvica Ledvica in trebušna slinavka Ledvica in jetra Srce Srce in jetra Srce in ledvica Jetra Trebušna slinavka SKUPAJ 2000 102 7 2 111 2001 101 8 4 113 2002 76 2 7 85 2003 75 9 8 92 2004 60 15 4 79 2005 81 14 9 104 2006 72 24 6 102 2007 83 1 30 9 123 2008 71 1 17 13 102 2009 52 18 1 15 86 2010 53 26 8 87 2011 68 34 10 112 2012 65 2 32 10 109 2013 47 1 30 7 85 2014 69 8 21 9 107 2015 50 8 42 1 18 1 120 2016 47 3 50 17 2 119 2017 51 2 42 18 113 2018 72 1 48 19 140 2019 95 1 1 42 17 156 Vir: http://statistics.eurotransplant.org/ 110 100 90 80 70 60 50 40 30 20 10 Gibanje števila bolnikov na cakalnem seznamu ŠTEVILO UMRLIH DAROVALCEV V letu 2019 smo v slovenskih donorskih bolnišnicah pridobili 44 aktivnih umrlih darovalcev*, ki so bili medicinsko ustrezni in za katere smo pridobili privolitev svojcev. Uvodoma so prikazani podatki o številu aktivnih umrlih darovalcev v Sloveniji v primerjavi z ostalimi državami sveta. V nadaljeva­nju so prikazani podatki o številu dejanskih umrlih darovalcev*, kar pomeni, da je bil od vsakega darovalca presajen vsaj en organ. V primerjavi z ostalimi državami clanicami Eurotransplanta se Slovenija po številu dejanskih umrlih darovalcev na milijon prebivalcev v letu 2019 ponovno, kot že nekaj let zapored, uvršca na cetrto mesto. Število aktivnih umrlih darovalcev (MD) na milijon prebivalcev (NMP) v Sloveniji v letu 2019 v primerjavi z ostalimi državami sveta Država Število MD/NMP2019 1. Španija 48,9 2. ZDA 36,88 3. Hrvaška 34,63 4. Portugalska* 33,63 5. Francija 33,25 6. Belgija 30,4 7. Ceška 27 8. Finska 26,36 9. Belorusija 26,2 10. Malta* 25 Država Število MD/NMP2019 11. Anglija 24,88 12. Italija 24,7 13. Austrija 23,8 14. Urugvaj 22,86 15. Avstralija* 22,17 16.Slovenija 21,14 17. *Kanada** 20,56 18. Argentina* 19,6 19. Islandija 19,29 20. Švedska 19 Država Število MD/NMP2019 21. Estonija 18,8 22. Norveška 18,78 23. Litva 18,7 24. Madžarska 18,42 25. Švica 18,4 26. Irska 17,35 27. Danska 17,25 28. Brazilija* 16,73 29. Nizozemska 14,93 30. Slovaška* 14,35 *Podatki za leto 2018, **Število dejanskih darovalcev *Podatki za leto 2018 Država Število MD/NMP2019 31. Nova Zelandija* 13,19 32. Poljska 13,1 33. Latvija* 12,63 34. Luksenburg* 11,67 35. Kuba* 11,3 36. Iran* 11,26 37. Nemcija 11,2 Država Število MD/NMP2019 38. Izrael 10,8 39. Cile 10,4 40. Južna Koreja 8,68 41. Kolumbija* 8,04 42. Ekvador* 7,87 43. Turcija 7,54 44. Kostarika* 7 Država Število MD/NMP2019 45. Ciper 6,86 46. Kuvajt 6,75 47. Grcija 5,5 48. Rusija* 4,49 49. Kitajska* 4,43 50. Mehika* 4,39 51. Moldavija 4,1 Graf števila aktivnih umrlih darovalcev (MD) na milijon prebivalcev (NMP) MD/NMP 50 40 30 20 10 0 ŠPA ZDA HR POR FRA BEL CEŠ FIN BLR MAL ANG ITA AUS URU AUT SLO KAN ARG ISL ŠVE EST NOR LIT MAD ŠVI IRS DAN BRA NIZ SL N.Z. POL LAT LUK KUB IRA Država Število MD/NMP2019 Država Število MD/NMP2019 Država Število MD/NMP2019 52. Hong Kong 3,86 59. Dominik. republika 2,2 66. Severna Makedonija* 0,48 53. Savdska Arabija 3,77 60. ZAE* 1,1 67. Gvatemala* 0,29 54. Bolgarija 3,71 61. Japonska* 0,75 68. Jordanija* 0,21 55. Tajska 3,66 62. Trinidad in Tobago* 0,72 69. Nikaragva* 0,15 56. Romunija* 3,32 63. Panama* 0,71 70. Filipini 0,087 57. Katar* 2,59 64. Indija* 0,65 58. Peru 2,3 65. Malezija 0,53 *Podatki za leto 2018 Vir: IRODaT (International Registry in Organ Donation and Transplantation), www.irodat.org, Preliminary numbers 2019 MD/NMP 50 40 30 20 10 0 NEM IZR CIL J. KO. KOL EKV TUR KOS CIP KUV GRC RUS KIT MEH MOL H.K. S. AR. BOL TAJ ROM KAT PER DOM ZAE JAP T&T PAN IND MAL S.MA. GVA JOR NIK FIL Število dejanskih umrlih darovalcev (MD) na milijon prebivalcev (NMP) v Sloveniji v letu 2019 in v primerjavi z državami Eurotransplanta. Država Slovenija (SLO) Eurotransplant (ET) Število MD 38 2.042 MD/PMP 18,3 14,5 Število dejanskih umrlih darovalcev na milijon prebivalcev (MD/NMP) ter primerjava z državami Eurotransplanta v letu 2019 Država ET Število MD/NMP 2019 1. Hrvaška (HR) 31,4 2. Belgija (BE) 27,2 3. Avstrija (AT) 20,3 4. Slovenija (SLO) 18,3 5. Madžarska (HU) 18,2 6. Nizozemska (NL) 14,5 7. Nemcija (DE) 10,8 8. Luksemburg (LU) 8,1 Vir: http://statistics.eurotransplant.org/ Število dejanskih umrlih darovalcev (MD) ter število umrlih darovalcev na milijon prebivalcev (MD/NMP) Sloveniji v letih od 1998 do 2019 Leto Število MD Število MD/NMP 1998 27 13,6 1999 26 13,1 2000 22 11,1 2001 23 11,6 2002 35 17,6 2003 28 14 2004 36 18 2005 21 10,5 2006 30 15 2007 22 10,9 2008 36 17,8 2009 33 16,2 2010 40 19,5 Leto Število MD Število MD/NMP 2011 31 15,1 2012 46 22,4 2013 45 21,9 2014 43 20,9 2015 53 25,7 2016 41 19,9 2017 39 18,9 2018 40 19,4 2019 38 18,3 SKUPAJ 755 16,9 Vir: http://statistics.eurotransplant.org/ Graficni prikaz števila dejanskih umrlih darovalcev (MD) in število dejanskih umrlih darovalcev na milijon prebivalcev (MD/NMP) v Sloveniji v letih od 1998 do 2019 30 25 20 15 10 5 0 * Klasifikacija umrlih darovalcev organov MOREBITEN UMRLI DAROVALEC ORGANOV Bolnik s hudo poškodbo možganov ALI bolnik z zaustavitvijo krvnega obtoka IN ocitno medicinsko primeren za darovanje organov Darovanje po smrti zaradi zaustavitve krvnega obtoka (DSK) Lececi zdravnik prepozna/opozori na možnega darovalca Darovanje po možganski smrti (DMS) MOŽEN DAROVALEC (DSK) a. Oseba, pri kateri se je zaustavilo delovanje krvnega obtoka in dihanje, postopki oživljanja se ne uporabijo oz. se ne nadaljujejo. ALI b. Oseba, pri kateri je mogoce predvideti, da se bo v dolocenem casovnem okviru zaustavilo delovanje krvnega obtoka in dihanje, kar bo omogocilo pridobitev organov. Razlogi, zakaj možen darovalec ne postane dejanski darovalec SISTEM DELA - Zdravstveno osebje ni prepoznalo /opozorilo na možnega mrtvega darovalca ali primernega darovalca, - Možganska smrt ni potrjena (npr. ne izpolnjuje meril) oz. posto­pek ugotavljanja MS ni zakljucen (npr. ker ni na voljo ustreznih diagnosticnih naprav oz. osebja, ki bi opravilo potrditveni test), - Smrt zaradi zaustavitve krvnega obtoka ni pravocasno potrjena, - Logisticne težave (npr. ekipa za odvzem organov ni na voljo), - Ni ustreznega prejemnika (npr. pri otroku, krvna skupina, pozitivna serologija). DAROVALEC/ORGAN - Medicinsko neustrezen (npr. pozitivna serologija, tumor), - Hemodinamska nestabilnost /nepredvidena zaustavitev srca, -Anatomske, histološke in/ali funkcionalne nepravilnosti organov, - Organi poškodovani med postopkom pridobivanja, - Nezadostna perfuzija organov ali krvni strdek. PRIVOLITEV - Umrli je za casa življenja izrazil voljo, da ne želi biti darovalec, - Zavrnitev svojcev umrlega, - Zavrnitev mrliškega oglednika ali preiskovalnega sodnika zaradi forenzicnih razlogov. MOŽEN DAROVALEC (DMS) Oseba, katere klinicno stanje kaže na verjetnost, da izpolnjuje merila za možgansko smrt. PRIMEREN DAROVALEC (DSK) Medicinsko ustrezna oseba, pri kateri je bila ugotovljena smrt na podlagi nepovratne prekinitve delovanja krvnega obtoka in dihanja, glede na relevantno zakonodajo, v casovnem okviru, ki omogoca pridobitev organov. PRIMEREN DAROVALEC (DMS) Medicinsko ustrezna oseba, pri kateri je bila ugotovljena smrt na podlagi nevroloških meril, glede na relevantno zakonodajo. AKTIVEN DAROVALEC (DSK) Primeren darovalec, za katerega imamo privolitev a. Narejen je bil operacijski rez z namenom prido­bitve organov za namen presaditve. ALI b. Pridobljen je bil vsaj en organ za namen presaditve. AKTIVEN DAROVALEC (DMS) Primeren darovalec, za katerega imamo privolitev a. Narejen je bil operacijski rez z namenom pridobitve organov za namen presaditve. ALI b. Pridobljen je bil vsaj en organ za namen presaditve. DEJANSKI DAROVALEC (DSK) Aktiven darovalec, od katerega je bil presajen vsaj en organ. DEJANSKI DAROVALEC (DMS) Aktiven darovalec, od katerega je bil presajen vsaj en organ. Upoštevati je potrebno »pravilo umrlega darovalca«. Bolnik lahko postane darovalec šele po smrti, pridobitev organov ne sme povzrociti smrti darovalca. Povzeto po Madridski resoluciji o darovanju organov in transplantaciji REGISTER OPREDELJENIH OSEB GLEDE DAROVANJA ORGANOV IN TKIV PO SMRTI Vsak slovenski državljan ima v casu življenja pravico in možnost, da se opredeli glede daro­vanja organov in tkiv. Odlocitev formalno potrdimo z vpisom v nacionalni register opredeljenih oseb, ki je bil vzpostavljen leta 2004. Izjavo o opredelitvi glede darovanja lahko podpišemo oseb-no na številnih pooblašcenih mestih v vec krajih po Sloveniji (natancen seznam je objavljen na www.slovenija-transplant.si) ali elektronsko z digitalnim podpisom preko portala eUprava (https://e-uprava.gov.si/). Od junija 2017 je poleg opredelitve ZAdarovanje mogoca tudi oprede­litev PROTI darovanju. V letu 2019 smo zbrali skupaj 1.254 opredelitev (1.245 ZAin 9 PROTI), od tega 566 po elektron-ski poti. Do 31. 12. 2019 je bilo v register vpisanih skupaj 9.869 oseb (9.855 ZA in 14 PROTI). Število vpisanih v registru opredeljenih oseb glede darovanja organov in tkiv po letih v obdobju od 2004 do 2019 Leto Št. vpisanih 2004 91 2005 228 2006 309 2007 386 2008 460 2009 513 Leto Št. vpisanih 2010 382 2011 381 2012 312 2013 300 2014 740 2015 632 Leto Št. vpisanih 2016 594 2017 1.523 2018 1.764 2019 1.254 SKUPAJ 9.869 Vir: arhiv Slovenija-transplanta Graficni prikaz vpisanih v registru opredeljenih posmrtnih darovalcev po letih v obdobju od 2004 do 2019 1800 1650 1500 1350 1200 1050 900 750 600 450 300 150 0 ODSTOTKI ODKLONITEV PRI POGOVORU S SVOJCI Pogovor s svojci oz. bližnjimi osebami možnega mrtvega darovalca (MMD) glede darovanja se opravi v vseh primerih, ko je možno darovanje organov za presaditev. Transplantacijski koordi­nator šele po potrditvi smrti ter vpisu casa smrti preveri v registru, ali je bil umrli opredeljen kot darovalec po smrti. Kljub znani opredelitvi centralni koordinator za transplantacijo vedno opravi pogovor o darovanju s svojci umrlega. V pogovoru poskuša izvedeti, kakšno je bilo stališce umr­lega glede posmrtnega darovanja in v primeru privolitve v nadaljevanju pogovora pridobi dodatne zdravstvene podatke, ki so pomembni za darovanje. Ce volja ni znana, se na koncu odlocijo svojci. Vsi postopki so izvedeni z visoko stopnjo tanko-cutnosti, razumevanja izjemno težkih custvenih okolišcin ter v skladu z zakonodajnimi dolocbami in medicinsko doktrino. V letu 2019 se je odstotek odklonitev v primerjavi z letom 2018 obcutno zmanjšal, in sicer je darovanje odklonilo 23 % svojcev. Ker je smrt bližnjega za vsakogar izmed nas težka izkušnja, Slovenija-transplant svojcem darovalcev nudi možnost posvetovanja ob žalovanju s strokovno usposobljeno in izkušeno strokovnjakinjo. Odstotki odklonitev darovanja v obdobju od 1998 do 2019 Vir: arhiv Slovenija-transplanta Leto % 1998 21 1999 30 2000 37 2001 36 Leto % 2002 22 2003 23 2004 30 2005 19 Leto % 2006 20 2007 15 2008 20 2009 15 Leto % 2010 20 2011 14 2012 31 2013 31 Leto % 2014 20 2015 19 2016 24 2017 17 Leto % 2018 34 2019 23 Graficni prikaz odstotkov odklonitev darovanja v obdobju od 1998 do 2019 40 30 20 10 DELOVANJE DONORSKIH CENTROV V slovenski donorski program je vkljucenih enajst donorskih bolnišnic oz. centrov: UKC Ljubljana in UKC Maribor ter splošne bolnišnice v Celju, Murski Soboti, Novi Gorici, Izoli, na Ptuju, v Novem mestu, Slovenj Gradcu, na Jesenicah in v Brežicah. V donorskem centru izvajajo naslednje dejavnosti: • odkrivajo možne mrtve darovalce, • izvajajo diagnostiko možganske smrti, • ugotavljajo primernost organov in tkiv za odvzem in presaditev, • seznanjajo pokojnikove bližnje z možnostjo darovanja in pridobijo soglasje svojcev, • ohranjajo delovanje organov mrtvih darovalcev – v intenzivni terapiji in med odvzemom organov, • sodelujejo pri odvzemih organov in tkiv, ki jih izvajajo slovenske in tuje kirurške ekipe. Najvec darovalcev v Sloveniji pridobijo v UKC Ljubljana, kjer imajo najvecje število postelj v enotah intenzivne terapije in so v letu 2019 pridobili 15 dejanskih umrlih darovalcev. Rezultati so dobri tudi v UKC Maribor, kjer so v letu 2019 pridobili 8 dejanskih umrlih darovalcev (od 10 aktivnih) in v SB Celje s 6 pridobljenimi dejanskimi umrlimi darovalci (od 7 aktivnih). Od manjših donorskih bolnišnic sta v letu 2019 z odlicnimi rezultati izstopali SB Jesenice in SB Nova Gorica s po tre-mi dejanskimi darovalci, po enega darovalca so pridobili še v SB Izola, SB Novo mesto in v SB Brežice, ki se je donorskemu programu uradno pridružila v letu 2018. Število in delež dejanskih umrlih darovalcev v posameznih donorskih centrih (DC) v letu 2019 2,5% 2,5% 2,5% UKC Ljubljana UKC Maribor *ONIT – oddelek nevrološke intenzivne terapije, SB Celje CIT – centralna intenzivna terapija, SB Jesenice KOIIM – klinicni oddelek interne intenzivne medicine, KVIT – Kardiovaskularna intenzivna terapija, SB Nova gorica KOKIT – Klinicni oddelek za otroško kirurgijo in intenzivno terapijo SB Izola Vir: arhiv Slovenija-transplanta Donorski center Število MD Delež v % UKC Ljubljana skupaj 15 39,5 Od tega ONIT* 5 Od tega CIT 7 Od tega KOIIM 1 Od tega KVIT 1 Od tega KOKIT 1 UKC Maribor 8 21 SB Celje 6 16 SB Jesenice 3 8 SB Nova Gorica 3 8 SB Izola 1 2,5 SB Novo mesto 1 2,5 SB Brežice 1 2,5 SKUPAJ 38 100 SB Novo mesto SB Brežice CVRSTI ORGANI Število dejanskih umrlih darovalcev po donorskih centrih od 1998 do 2019 Vir: arhiv Slovenija-transplanta Leto UKC LJ UKC MB SB CE SB MS SB NG SB Izola SB Ptuj SB JE SB NM SB SG SB Brežice 1998 / 99 16/13 8/7 0/1 1/0 1/3 1/0 0/0 0/2 0/0 0/0 0/0 2000 8 10 1 1 1 1 2001 13 8 1 1 2002 17 15 1 1 1 2003 12 9 2 1 1 1 2 2004 17 10 2 2 2 1 1 1 2005 13 3 1 1 1 2 2006 17 7 2 1 1 1 1 2007 9 8 2 1 1 1 2008 18 9 5 2 1 1 2009 23 1 5 2 1 1 2010 26 8 2 2 1 1 2011 21 6 2 1 1 2012 22 8 9 3 1 2 1 2013 21 8 7 5 3 1 2014 31 4 3 1 1 2 1 2015 25 11 10 2 1 1 1 1 1 2016 28 2 7 1 2 1 2017 22 7 4 2 1 1 2 2018 18 13 4 2 1 1 1 2019 15 8 6 3 1 3 1 1 SKUPAJ 405 170 76 23 24 16 13 13 7 6 2 Graficni prikaz števila dejanskih umrlih darovalcev po donorskih centrih od 1998 do 2019 60 50 40 30 20 10 0 755 umrlih darovalcev v SLO od 1998 do 2019 27 26 22 23 35 28 36 21 30 22 36 33 40 31 46 45 43 53 41 39 40 38 LEGENDA UKC Ljubljana UKC Maribor SB Celje SB Murska Sobota SB Izola SB Jesenice SB Nova Gorica SB Ptuj SB Novo mesto SB Slovenj Gradec SB Brežice 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 Potencial in realizacija v donorskih bolnišnicah (zakljucena analiza za leto 2018) Potencial za darovanje za posamezno donorsko bolnišnico se izraža kot odstotek možgansko umrlih od vseh umrlih na oddelku za intenzivno zdravljenje (OIZ). Pove nam, pri koliko umrlih je bila do konca izpeljana diagnostika možganske smrti. Potencial je v neposredni povezavi z odkri­vanjem primernih darovalcev na OIZ. Realizacija v procesu darovanja nam pove, koliko primernih darovalcev (dokazana možganska smrt) je postalo aktivnih darovalcev. Izraža se kot odstotek aktivnih darovalcev od vseh dokazanih možgansko umrlih na OIZ. Vir: arhiv Slovenija-transplanta Donorska bolnišnica Vse smrti v OIZ MD PD *Potencial (%) Dosegljivi (%) AD Realizacija (%) **Dosegljiva (%) UKC Ljubljana 389 83 46 11.8 13.7 18 39 65 UKC Maribor 284 56 25 8.8 13.7 17 68 65 SB Celje 131 39 11 8.4 8.3 7 64 55 SB Murska sobota 70 14 5 7.1 8.3 2 40 55 SB Nova Gorica 90 17 2 2.2 8.3 1 50 55 SB Novo mesto 143 9 4 2.8 8.3 0 0 55 SB Izola 60 9 1 1.6 8.3 1 100 55 SB Jesenice 52 7 2 3.8 8.3 1 50 55 SB Slovenj Gradec 55 8 1 1.8 8.3 1 100 55 SB Ptuj 72 8 0 / 8.3 0 / 55 SB Brežice 47 5 1 2.1 8.3 0 0 55 OIZ – oddelek za intenzivno zdravljenje, MD – možni darovalec, PD – primerni darovalec (dokazana možganska smrt), AD – aktivni darovalec (privolitev svojcev, odvzem organov), Potencial - % možgansko umrlih od vseh umrlih na OIZ = % PD/vse smrti na OIZ, Realizacija - % aktivnih darovalcev od vsem možgansko umrlih = % AD/PD *Potencial za donorsko bolnišnico je pricakovano višji za bolnišnice, ki imajo svojo nevrokirurško enoto in lahko dosežejo potencial tudi do 13,7 % (dosegljivi potencial). Dokaj blizu svojemu po­tencialu je bil UKC Ljubljana, medtem ko je UKC Maribor v letu 2018 za svojim potencialom neko­liko zaostal. Za bolnišnice brez lastne nevrokirurške enote je dosegljivi potencial za darovanje do 8,3 %. To številko je leta 2018 celo presegla SB Celje, relativno blizu je bila SB Murska Sobota. Vecina donorskih bolnišnic je v letu 2018 še zaostajala za dosegljivimi vrednostmi, kar kaže na to, da lahko še dodatno izboljšamo odkrivanje primernih darovalcev. Realizacija je odvisna predvsem od odstotka absolutnih medicinskih kontraindikacij in zavrnitev darovanja s strani svojcev v obravnavanem casovnem obdobju. **Dosegljiva realizacija upošteva do 20 % absolutnih medicinskih kontraindikacij in do 10-odstot-no stopnjo odklonitve darovanja s strani svojcev, loci tudi med donorsko bolnišnico z nevrokirur­ško enoto ali brez nje (razlika 10 %), ostale ovire v donorskem procesu pa skupno predstavljajo do 5 %. Tako je izracunana dosegljiva realizacija za bolnišnice z nevrokirurško enoto 65 %, za tiste brez nevrokirurške enote pa 55 %. V letu 2018 so dosegljivo realizacijo presegli v UKC Ma-ribor, SB Celje, SB Izola in SB Slovenj Gradec. Pri nizkih vrednostih potenciala zasledimo tudi odstopanja, kot npr. v SB Izola in SB Slovenj Gradec, kjer so dosegli 100-odstotno realizacijo pri edinem primeru, pri cimer ni bilo medicinskih kontraindikacij za darovanje, prav tako pa so svojci v darovanje privolili. Pri bolnišnicah, v katerih leta 2018 ni bilo dokazanih možganskih smrti in ni bilo aktivnih darovalcev, sta potencial in realizacija prav tako 0 % oziroma nemerljiva (/). CVRSTI ORGANI Seznam odgovornih oseb (t. i. bolnišnicnih transplantacijskih koordinatorjev), ki skrbijo za razvoj, potek ter delovanje donorskega programa v posameznih donorskih centrih za leto 2019 Donorski center Odgovorne osebe UKC Ljubljana prim. asist. mag. Rade Stanic, dr. med. UKC Maribor Tanja Kuprivec, dr. med. SB Brežice Nataša Pirc, dr. med. SB Celje Barbara Hudournik, dr. med. SB Izola Damjan Polh, dr. med. SB Jesenice Andraž Nastran, dr. med. SB Murska Sobota prim. Daniel Grabar, dr. med. SB Nova gorica Edyta Cerkini, dr. med. SB Novo mesto Matej Godnic, dr. med. SB Ptuj prim. Majda Šarman, dr. med. SB Slovenj Gradec Rok Popic, dr. med. PRIDOBLJENI CVRSTI ORGANI ZA NAMEN ZDRAVLJENJA Število pridobljenih organov je odvisno od števila pridobljenih umrlih darovalcev, pa tudi od staro­sti in medicinskih kontraindikacij. V letu 2019 je bilo število pridobljenih organov umrlih darovalcev iz zgoraj navedenih razlogov nekoliko nižje od preteklih let. V nadaljevanju so prikazani podatki za leto 2019 in primerjava s preteklimi leti. Število pridobljenih organov slovenskih umrlih darovalcev v letu 2019 Ledvica Srce Jetra Pljuca (obe pljucni krili) Trebušna slinavka SKUPAJ 75 15 31 11 0 132 Vir: arhiv Slovenija-transplanta LEGENDA Ledvica Srce Jetra Pljuca Pridobljeni organi slovenskih umrlih darovalcev od leta 2000 do 2019 Vir: arhiv Slovenija-transplanta Leto Ledvica Srce Jetra Pljuca (obe krili) Trebušna slinavka SKUPAJ 2000 43 14 17 4 13 91 2001 44 19 19 7 6 95 2002 66 28 22 11,5 11 138,5 2003 56 15 21 8 15 115 2004 70 12 25 3,5 6 116,5 2005 39 13 16 9 8 85 2006 59 16 21 7,5 6 109,5 2007 46 12 19 7 3 87 2008 71 11 31 9 2 124 2009 65 9 26 4 6 110 2010 80 20 37 13 8 158 2011 58 14 24 4 5 105 2012 89 25 39 8 5 166 2013 86 26 39 19 8 178 2014 80 16 38 11 2 147 2015 92 20 46 6 6 170 2016 68 13 39 13,5 2 135,5 2017 68 19 40 15 4 146 2018 79 17 34 9 3 142 2019 75 15 31 11 / 132 SKUPAJ 1.334 334 584 180 119 2.551 Graficni prikaz pridobljenih organov slovenskih umrlih darovalcev od leta 2000 do 2010 LEGENDA Ledvica Srce Jetra Pljuca Trebušna slinavka Graficni prikaz pridobljenih organov slovenskih umrlih darovalcev od leta 2011 do 2019 2.551 pridobljenih organov umrlih darovalcev v SLO od 2000 do 2019 LEGENDA Ledvica Srce Jetra Pljuca Trebušna slinavka PRESAJENI CVRSTI ORGANI V Sloveniji imamo en transplantacijski center, to je Univerzitetni klinicni center v Ljubljani, kjer se izvajajo programi za presaditve cvrstih organov. Sistem razporejanja organov zagotavlja enako dostopnost do terapije s presaditvijo organov vsem državljanom Slovenije. Naloge transplantacij­ skega centra so: • priprava prejemnikov za uvrstitev na cakalni seznam, • presaditev organov, • vodenje bolnikov po presaditvi. Transplantacijski center od leta 2014 vodi kardiovaskularni kirurg dr. Ivan Kneževic, dr. med. V letu 2019 je bilo opravljenih 95 presaditev organov. Najvec je presajenih ledvic, po številu vseh presajenih organov od umrlih darovalcev na milijon prebivalcev smo nekoliko nad povprecjem držav Eurotransplanta. Pomembno višje pa je število presaditev src na milijon prebivalcev, kjer smo zadnjih nekaj let v samem svetovnem vrhu. Po obuditvi nacionalnega programa presaditve pljuc v letu 2018 so v UKC Ljubljana v letu 2019 opravili kar deset presaditev obeh pljucnih kril, v enem primeru pa je bila presaditev za sloven-skega pediatricnega bolnika opravljena še v AKH na Dunaju, kjer so sicer doslej opravljali presa­ditve pljuc za slovenske prejemnike. Pediatricne transplantacije delno opravljajo v UKC Ljubljana, delno pa v bližnjih evropskih trans-plantacijskih centrih (ledvice v LKH v Gradcu, jetra v Bergamu). Za obravnavo in pripravo pred presaditvijo in zdravljenje ter sledenje bolnika po presaditvi organa poskrbijo na pristojnih oddel­ kih v UKC Ljubljana. Presajeni cvrsti organi umrlih darovalcev v UKC Ljubljana v letu 2019 in primerjava z Eurotransplantom -absolutno število in število na milijon prebivalcev (NMP) Ledvica MD Srce Jetra Trebušna slinavka Pljuca SKUPAJ Št. NMP Št. NMP Št. NMP Št. NMP Št. NMP Št. NMP SLO 38 18,3 22 10,6 24 11,5 1 0,5 10 4,8 95 44,7 ET 3.191 23,0 668 4,8 1.571 11,5 156 1,2 1.375 5,1 6.961 44,1 Vir: http://statistics.eurotransplant.org/ Graficni prikaz presajenih cvrstih organov umrlih darovalcev na miljon prebivalcev (NMP) v UKC Ljubljana v letu 2019 in primerjava z Eurotransplantom 25 20 15 10 5 0 SLO ET LEGENDA Število presajenih cvrstih organov mrtvih darovalcev na milijon prebivalcev (NMP) v Sloveniji leta 2019 in primerjava z državami Eurotransplanta Država ET Ledvica Jetra Srce Trebušna slinavka Pljuca Število presaditev/NMP 2019 1. Belgija (BE) 33,9 22,8 7,3 1,8 9,9 72,3 2. Hrvaška (HR) 31,4 30,2 9,3 1,2 70,2 3. Avstrija (AV) 34,8 15,7 7,6 1,7 11,2 68,6 4. Slovenija (SLO) 18,3 11,5 10,6 0,5 4,8 44,7 5. Nizozemska (NL) 26,0 9,7 2,2 1,7 6,1 44,4 6. Madžarska (MAD) 24,1 8,1 7,4 0,5 1,8 41,2 7. Nemcija (NE) 19,4 9,3 4,1 1,1 4,3 37,0 PMP 50 40 30 20 10 0 72,3 70,2 68,6 44,7 44,4 41,2 37,0 Vir: http://statistics.eurotransplant.org/ LEGENDA Ledvica Srce Jetra Trebušna slinavka Pljuca BE HR AV SLO NL MAD NE Število presajenih cvrstih organov umrlih darovalcev v Sloveniji od leta 1970 do 2019 Vir: arhiv Slovenija-transplanta Leto Ledvica Srce Jetra Pljuca* Trebušna slinavka SKUPAJ Od 1970 do 1985 1 1 1986 7 7 1987 18 18 1988 16 16 1989 14 14 1990 17 1 1 19 1991 11 11 1992 20 20 1993 4 1 5 1994 14 2 16 1995 10 3 1 14 1996 6 2 8 1997 19 6 1 26 1998 46 4 4 54 1999 37 7 9 3 56 2000 44 7 10 1 62 2001 47 4 9 1 61 2002 55 3 11 69 Leto Ledvica Srce Jetra Pljuca* Trebušna slinavka SKUPAJ 2003 43 3 9 2 57 2004 55 3 15 73 2005 28 5 13 2 48 2006 48 8** 8 2 66 2007 30 11 10 1 52 2008 52 6 22 4 84 2009 43 18 18 2 2 83 2010 61 19 23 3 1 107 2011 46 14 20 7 1 88 2012 62 29*** 27 2 120 2013 60 30 21 8 4 123 2014 55 33 31 3 122 2015 64 24 24 7 5 124 2016 44**** 31 27 10 5 117 2017 46**** 24 23 8 101 2018 54**** 23 27 7 3 114 2019 38 22 24 11 1 96 SKUPAJ 1.215 343 386 85 23 2.052 *Vecina presaditev pljuc pri slovenskih prejemnikih je bila do vkljucno leta 2018 opravljena v AKH na Dunaju, z izjemo 2003 (1 presaditev v UKC LJ) in 2018 (2 presaditvi v UKC LJ). V letu 2019 je bilo v UKC Ljubljana opravljenih 10 presaditev pljuc in ena pediatricna presaditev v AKH Dunaj. ** Eno srce slovenskega darovalca je bilo presajeno slovenskemu bolniku v Gradcu. *** Eno srce je bilo skupaj s pljuci presajeno slovenskemu bolniku na Dunaju. **** V letih 2016, 2017 in 2018 sta bili opravljeni tudi po dve presaditvi ledvice živega sorodnega darovalca. Skupno število presajenih ledvic v letu 2016 je torej 46, v letu 2017 48 in v letu 2018 56 ledvic. Graficni prikaz števila presajenih cvrstih organov umrlih darovalcev v Sloveniji od leta 1970 do 2006 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 Vir: arhiv Slovenija-transplanta LEGENDA Ledvica Srce Jetra Pljuca Trebušna slinavka Graficni prikaz števila presajenih cvrstih organov umrlih darovalcev v Sloveniji od leta 2007 do 2019 2.052 presajenih cvrstih organov umrlih darovalcev v SLO od 1970 do 2019 140 120 100 80 60 40 20 0 52 84 83 107 88 120 123 122 124 117 100 114 96 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 LEGENDA Vir: arhiv Slovenija-transplanta Ledvica Srce Jetra Pljuca Trebušna slinavka USPEŠNOST SLOVENSKIH PROGRAMOV ZA PRESADITVE ORGANOV Preživetje bolnikov po presaditvi srca Od leta 1990 do konca 2019 je bilo v UKC Ljubljana opravljenih 343 presaditev srca, v letu 2019 so presadili 22 src. 18 (82 %) bolni­kov je bilo transplantiranih urgentno, 4 (18 %) pa redno. Glede na podatke Eurotransplan­ta se je UKC Ljubljana ponovno uvrstil med prvih 10 (od 42) najvecjih centrov za presadi­tve srca v obmocju Eurotransplanta in se po številu opravljenih presaditev lahko primerja z najvecjimi centri Nemcije, Belgije, Madžarske in Avstrije. Vecletno povprecje (2009-2018) cakalne do-be za elektivno presaditev srca znaša pribli­ žno 248 dni (mediana 67 dni), za urgentno presaditev srca pa približno 50 dni (mediana 50 dni). V letu 2019 je bila povprecna cakal­na doba za elektivno presaditev srca 452 dni (mediana 238 dni) in za urgentno presaditev 59 dni (mediana 50 dni). Rezultati preživetja bolnikov po presaditvi so primerljivi z rezultati iz mednarodnega refe­ rencnega registra ISHLT (The International Society for Heart & Lung Transplantation). Preživetje odraslih bolnikov po presaditvi srca v % (za obdobje 1990-2018, n=321) 30-dnevno preživetje Enoletno preživetje Petletno preživetje 92 % 85 % 77 % Vir: Porocilo o delovanju programa za napredovalo srcno popušcanje in presaditev srca za leto 2019 (KO za kardiologijo, UKC Ljubljana) 100 75 50 25 0 % 91 Preživetje bolnikov po presaditvi ledvice V Sloveniji je bilo v obdobju po prikljucitvi Eurotransplantu (1. 1. 2000-31. 12. 2019) pre­sajenih 983 ledvic živih in umrlih darovalcev. V prvem letu po presaditvi so pri 12,7 % vseh bol­nikov s presajenim organom zaznali klinicno, z biopsijo dokazano akutno zavrnitev presadka. Pojavnost klinicne, z biopsijo dokazane zavrnit­ ve presajene ledvice je primerljiva s podatki v literaturi in z drugimi centri v razvitem svetu. Nekaterim prejemnikom so ledvico presadili v kombinaciji z drugimi organi (trebušna slinavka, jetra, srce). Mediani cas od uvrstitve na cakalno listo do presaditve je približno 300 dni za obdobje od 2013 do 2016. Po podatkih Eurotransplanta za triletno obdobje (2010-2014) v prvem letu po vkljucitvi na cakalni seznam presadimo ledvico 55 % bolnikom, po treh letih pa približno 80 % bolnikom. Aktualno 1- in 5-letno preživetje slovenskih bol­nikov in presadkov je po podatkih Eurotrans­planta za obdobje 2000-2014 nad povprecjem držav clanic Eurotransplanta in je primerljivo z najrazvitejšimi centri v svetu. Preživetje bolnikov in presadkov po presaditvi ledvice v % (za obdobje 2000-2019, n=983) Enoletno preži vetje Petletno preživetje Bolniki 98 % 93,5 % Presadki 94% 86,7 % 100 95 90 85 80 75 70 65 60 98 94 93,5 86,7 % Enoletno Petletno PREŽIVETJE LEGENDA Bolniki Presadki Vir: Kazalniki kakovosti Centra za transplantacijo ledvic (KO za nefrologijo, UKC Ljubljana) Preživetje bolnikov po presaditvi jeter V obdobju od 1995 do 31. 12. 2019 je bi-lo v UKC Ljubljana opravljenih 386 pre­saditev jeter. 63 % bolnikov je potrebo­valo presaditev zaradi ciroze jeter, 10 % zaradi akutne odpovedi jeter, 9,7 % za­radi raka na jetrih, 9,3 % zaradi hole-statske/kongenitalne bolezni in 2,1 % zaradi presnovne bolezni jeter. Med osta­ le vzroke za presaditev (5,9 %) sodijo še benigni jetrni tumorji ali policisticna bolezen jeter in Budd-Chiarijev sindrom. Povprecna cakalna doba za presaditev je­ter za leto 2019 je približno 254 dni, media-na znaša 115 dni. Preživetje bolnikov in presadkov po presaditvi jeter v % (za obdobje 1988-junij 2018*, n=291 (bolniki) in n= 323 (presadki) Enoletno preživetje Triletno preživetje Petletno preživetje Bolniki 86 % 81 % 79 % Presadki 79 % 74 % 71 % Vir:ELTR (European Liver Transplant Registry, SLLUBL: Specific Analyses, december 2018) * Podatki za leto 2019 bodo na voljo šele v sredini leta 2020, zato objavljamo podatke za leto 2018 90 PREŽIVETJE 85 80 75 70 65 60 % Enoletno Triletno Petletno Bolniki Presadki LEGENDA Vir: Podatki KO za gastroenterologijo UKC Ljubljana Preživetje bolnikov po presaditvi trebušne slinavke (socasno z ledvico) V obdobju od februarja 2009 do 31. 12. 2019 je bilo v Sloveniji opravljenih 22 socasnih presaditev ledvice in trebušne slinavke. V le­tu 2019 je bila opravljena 1 socasna presadi­tev ledvice in trebušne slinavke. Po 1 letu je bilo delujocih 17 trebušnih sli­navk, 5 trebušnih slinavk je bilo odstranjenih v zgodnjem potransplantacijskem obdobju. Enoletno preživetje trebušnih slinavk znaša 77,8 % (n = 18), triletno preživetje prav tako 77,8 % (n = 18). Enoletno preživetje ledvic pri bolnikih po socasni presaditvi ledvice in trebušne slinavke znaša 94,4 %, triletno pre­živetje prav tako 94,4 %. Enoletno, triletno in petletno preživetje bolni­kov s presajeno ledvico in trebušno slinavko je bilo 100-odstotno. Vsi bolniki (n = 21), ki so imeli po enem le­tu delujoco trebušno slinavko, so bili na dan 31. 12. 2019 inzulinsko neodvisni. En bolnik je umrl 6 let po presaditvi z delujoco trebuš- no slinavko in ledvico. % Preživetje bolnikov in presadkov po socasni presaditvi trebušne slinavke in ledvice v % (za obdobje 1988-2019, n = 22 (bolniki) in n = 18 (presadki)) Preživetje bolnikov po presaditvi pljuc v % (za obdobje 1997-2019, n = 85) V obdobju 1997-2019 je bilo pri slovenskih bolnikih opravljenih 85 presaditev pljuc, od tega je bila pri enem bolniku opravljena ponovna presaditev. V letu 2018 so v UKC Ljubljana ponovno priceli z lastnim progra-mom presaditve pljuc in v letu 2019 opra­vili 10 transplantacij obeh pljucnih kril. Pr-va transplantacija enega pljucnega krila je bila v UKC Ljubljana opravljena leta 2003. V letu 2019 je bilo pri slovenskih bolnikih skupaj opravljenih 11 presaditev pljuc, od tega 1 pediatricna presaditev v univerzitet­ni bolnišnici (AKH) na Dunaju. Preživetje bolnikov po presaditvi pljuc v % (za obdobje 1997-2019, n=85) Enoletno preživetje Triletno preživetje Petletno preživetje Bolniki 85 % 78,9 % 72,8 % Vir: Porocilo - doc. dr. Matevž Harlander, dr. med. (KO za pljucne bolezni in alergologijo, UKC Ljubljana) 90 85 80 75 70 65 60 % Enoletno Triletno Petletno PREŽIVETJE Bolniki LEGENDA Tkiva in celice PRESADITVE KRVOTVORNIH MATICNIH CELIC Presaditev krvotvornih maticnih celic (KMC) je najbolj razširjena oblika celicnega zdravljenja, saj se na ta nacin zdravi vec kot 70 malignih in nemalignih bolezni, pri dolocenih hematoloških obo­lenjih pa je glavna terapevtska in tudi edina možnost za ozdravitev. Sodoben nacin zdravljenja s KMC v optimalnih pogojih dosega vec kot 90-odstotno uspešnost (http://www.ztm.si). Za takšen uspeh pa je potrebno dobro imunsko (HLA) ujemanje darovalca in prejemnika. Sistem HLA je pri vsakem cloveku zelo raznolik in zato je najti ustrezen par zahtevno delo. V mednarodni skupnosti so se zdravniki odlocili za ustanovitev vecjih registrov tipiziranih prostovoljnih darovalcev KMC, ki bi omogocali bistveno vecjo možnost za ujemanje HLA in s tem uspešnost presaditve. Poznamo vec vrst ujemanja med darovalcem in prejemnikom. Kadar je možno uporabiti lastne KMC, to imenujemo avtologno darovanje. Ce to ni možno, išcemo drugega darovalca, ki je s prejemnikom v sorodu ali pa ne. Darovanje drugega darovalca imenujemo tudi alogenicno, pri cemer išcemo darovalca v Sloveniji in nato v tujini. Register Slovenija-donor V Sloveniji je bil leta 1991 ustanovljen register nesorodnih darovalcev Slovenija Donor, ki je nasled­nje leto postal polnopravni clan svetovnega registra Bone Marrow Donors Worldwide (BMDW). Na dan 31. 12. 2019 je bilo v register Slovenija Donor vpisanih 20.597 oseb, od tega jih je bilo v svetovni register BMDW vpisanih 19.475. Presaditve KMC v Sloveniji od leta 2000 do 2019 Tip presaditve 2000-2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 AUTO 531 68 101 74 63 84 86 92 88 89 ALO-ŽSD 102 9 8 7 11 10 15 12 13 11 ALO-ŽND 84 18 22 31 26 24 26 28 26 31 AUTO in ALO-ŽSD 21 SKUPAJ 738 95 131 112 100 118 127 132 127 131 AUTO – avtologne presaditve, ALO – alogenske presaditve, ŽSD – živi sorodni darovalec, ŽND – živi nesorodni darovalec Vir: Letno porocilo ZTM – Slovenija donor, podatke mesecno zbiramo za arhiv Slovenija-transplanta. 700 600 500 400 300 200 100 0 140 120 100 80 60 40 20 0 PROGRAM PRIDOBIVANJA IN PRESADITVE ROŽENIC Zdravljenje s presaditvijo roženic je ena najpogostejših in tudi najuspešnejših presaditev tkiv na svetu. Takšen nacin zdravljenja pogosto predstavlja edini nacin, s katerim izboljšamo vid zaradi predhodnega obolenja oz. poškodb. V Sloveniji pridobivamo roženice od umrlih darovalcev po dokoncni zaustavitvi srca ali po dokazani možganski smrti. Pridobljene in presajene roženice od leta 2010 do 2019 Leto Št. pridobljenih roženic *Št. presajenih roženic 2010 122 72 2011 91 40 2012 101 67 2013 116 74 2014 116 87 2015 102 76 2016 104 83 2017 138 91 2018 84 66 2019 108 88 * Podatki o presaditvah na Ocesni kliniki UKC Ljubljana v obdobju 2010–2017, od leta 2018 dalje pa so vkljucene tudi presaditve na Oddelku za ocesne bolezni UKC Maribor Vir: arhiv Slovenija-transplant SKUPAJ 744 presajenih od 2010-2019 Odvzem roženic je možen po predhodni privolitvi umrle osebe v casu življenja oz. ob nenaspro­tovanju bližnjih. Dokoncno odlocitev o primernosti roženice za presaditev vselej sprejme pre­jemnikov odgovorni zdravnik. Presaditev roženice izvajamo v dveh transplantacijskih centrih: na Ocesni kliniki v UKC Ljubljana ter na Oddelku za ocesne bolezni v UKC Maribor. Cakalni seznam bolnikov za presaditev roženice na Ocesni kliniki v UKC Ljubljana (na dan 1. 4. 2020) Diagnoza Število bolnikov Keratokonus 56 Ostale diagnoze 212 SKUPAJ Vir: arhiv Slovenija-transplant 268 LEGENDA Keratokonus: 56 bolnikov (21 %) Ostale diagnoze: 212 bolnikov (79 %) (poškodbe, degeneracija, retransplantacija, makule roženice, distrofija Fuchs, endotelna distrofija, cornea guttata, afaka in psevdofaka, keratopatija bullosa, vnetja, drugo) Vir: Ocesna klinika Ljubljana OSTALA TKIVA IN CELICE Sledljivost in transparentnost v programih presaditve oz. uporabe tkiv in celic za namen zdravljenja V Slovenija-transplantu smo vzpostavili sodelovanje z vsemi ustanovami za tkiva in celice, ki morajo imeti veljavno dovoljenje Javne agencije za zdravila in medicinske pripomocke (v nadalje­vanju: JAZMP). Sledljivost in transparentnost zagotavljamo z zbiranjem in pregledovanjem sprot­ nih porocil ustanov za tkiva in celice, ki nam porocajo o darovanju, pridobivanju, procesiranju, shranjevanju, dodeljevanju, uporabi in unicenju tkiv in celic. Po zakljucku leta na osnovi letnih porocil posameznih ustanov za tkiva in celice v Slovenija-trans­plantu pripravimo zbirno letno porocilo. Prav tako pripravimo letno zakljucno porocilo o hudih ne­želenih dogodkih in reakcijah ter ga posredujemo JAZMP, ki nato poroca Evropski komisiji. Ustanove za tkiva in celice ter zagotavljanje kakovosti in varnosti V Sloveniji je na nacionalni ravni v dejavnost preskrbe s tkivi in celicami vkljucenih 26 ustanov. Od tega je v program vkljucenih 15 bolnišnic in znotraj teh 40 klinicnih oddelkov. Glede na status je 18 ustanov za tkiva in celice javnih in 8 ustanov zasebnih. Zasebne ustanove imajo dovoljenje izkljucno za avtologno pridobivanje tkiv in celic. Slovenija-transplant in JAZMP zagotavljata delovanje sistema ter sproti ugotavljata in obravna­vata vse odklone, ki lahko vplivajo na kakovost in varnost tkiv in celic darovalcev, prejemnikov in osebja, ki je vkljuceno v posamezne procese. Za pridobitev dovoljenja mora vsaka ustanova izpolnjevati stroge strokovne in zakonske pogoje. Vse ustanove imajo vzpostavljen sistem kakovosti, v katerem so opisani vsi postopki za zagota­vljanje pogojev za kakovost tkiv in celic ter varnost prejemnikov. Vse ustanove redno nadzoruje JAZMP, v preverjanje sporocenih podatkov pa je vkljucen tudi Slovenija-transplant. Oploditev z biomedicinsko pomocjo in reproduktivne celice V Sloveniji so registrirani 4 centri za dejavnost oploditve z biomedicinsko pomocjo parom, ki ne morejo zanositi po naravni poti: OBMP Ljubljana, OBMP Maribor, OBMP Postojna in ZC Dravlje. Obseg dejavnosti je razviden iz tabele o pridobljenih in uporabljenih tkivih in celicah. Omenjeno podrocje spada po številu izvedenih postopkov med najobsežnejše. V letu 2019 je Ministrstvo za zdravje RS vzpostavilo strokovno skupino, v kateri sodelujejo centri za OBMP Ljubljana, Maribor, Postojna, zasebni zavod Zdravje in zavod Slovenija-transplant. Sku­pina pripravlja strokovne smernice in zakonodajo za vzpostavitev nacionalnega registra OBMP, v katerega bodo posamezni centri OBMP v predvidenem casovnem roku sporocali podatke o svoji dejavnosti. Upravitelj registra bo NIJZ, kjer bo ta register tudi fizicno namešcen. Zavod Slovenija- transplant bo imel dostop do podatkov za namen zagotavljanja sledljivosti, transparentnosti ter kakovosti in varnosti tkiv in celic. Pridobivanje in shranjevanje popkovnicne krvi in popkovnice V Sloveniji pridobivamo tudi krvotvorne maticne celice iz popkovnicne krvi in popkovnice ter tu­di drugih tkiv (npr. mlecni zobje). Dovoljenje za delo imajo ena javna tkivna banka – Zavod za transfuzijsko medicino (v nadaljevanju: ZTM) in tri zasebne ustanove (Izvorna celica, Biobanka in FH-S). Javna banka popkovnicne krvi pri ZTM je s 1. 12. 2014 zakljucila s sprejemanjem vzorcev popkovnicne krvi, saj je bilo zbranih in shranjenih zadostno število vzorcev, da lahko zadostijo potrebam v Sloveniji. Število pridobljenih tkiv in celic od 2009 do 2019 Leto 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 Koža* 28 45 22 36 85 89 52 57 32 22 24 Kosti* 38 123 108 67 93 82 147 74 80 78 71 Mehkokostni presadki* 22 39 / 3 11 3 9 / 12 / / Hrustanec* 37 21 4 12 11 11 12 / / / / Reproduktivne celice (št. celic) 15.854 43.472 8.640 27.479 41.929 37.542 39.769 26.191 36.338 13.778 26.813 *Enota: število odvzetih vzorcev Število uporabljenih tkiv in celic od 2009 do 2019 Leto 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 Koža* 36 10 14 34 67 23 31 28 / 20 3 Kosti* 23 47 57 97 59 62 92 82 72 71 81 Mehkokostni presadki* 12 / 2 2 3 4 3 5 2 3 5 Hrustanec* 15 / 3 7 4 9 5 1 / / 1 Reproduktivne celice* 1.450 2.018 29.651 23.330 23.506 27.271 31.127 26.620 31.817 12.110 5.109 *Enota: število uporabljenih vzorcev Vir: arhiv Slovenija-transplanta Število enot pridobljene popkovnicne krvi Ustanova / Leto 2015 2016 2017 2018 2019 Izvorna celica 76 144 107 82 81 Biobanka 175 178 266 110 224 FH-S 8 45 101 169 192 Neocelica 238 0* 0* 0* 0* *Ustanova prenehala z delovanjem Število enot pridobljene popkovnice Ustanova / Leto 2015 2016 2017 2018 2019 Izvorna celica 60 116 96 52 73 Biobanka 32 150 222 96 212 FH-S 8 42 96 114 196 Neocelica 198 0* 0* 0* 0* *Ustanova prenehala z delovanjem Vir: arhiv Slovenija-transplanta NEŽELENI DOGODKI IN REAKCIJE Slovenija-transplant je odgovoren za obravnavo neželenih dogodkov in reakcij ter odklonov na podrocju preskrbe s tkivi in celicami zaradi presaditve, t. i. histovigilanco. Namen zbiranja porocil o neželenih dogodkih in reakcijah ali tudi postavitev suma nanje je zagotavljanje kakovosti po­stopkov in s tem preprecevanja škode ali celo izgube tkiv in celic. Porocanje poteka na predpisanih obrazcih, za posamezen primer je treba oddati zacetno in konc­no porocilo. Oba obrazca sta prilogi Pravilnika o histovigilanci. Porocanje poteka v vec fazah: zaznava odklona, natancen opis, sprejem ustreznih ukrepov za preprecitev škode na tkivih in celicah ter ljudeh, porocanje ustreznim inštitucijam in obvešcanje vseh ustanov za tkiva in celice, ki so dobila tkiva in celice, pri katerih je prišlo do odklona. Vsi podatki, ki se zbirajo v sistemu histovigilance, so anonimizirani, da se zagotovi zasebnost in na drugi strani upošteva t. i. kultura neobtoževanja, kar pomeni, da se spodbuja porocanje, išcejo se rešitve oz. izboljšave in ni obsojanja izvajalcev na osebni ravni. V letu 2019 je Slovenija-transplant prejel 4 porocila o neželenih dogodkih, ki so nastala v verigi preskrbe s tkivi in celicami. Dva primera sta bila zaznana v centru OBMP in dva pri pridobivanju kosti. Pripravili smo analizo in korektivne ukrepe. V vseh štirih primerih ni bilo težjih posledic, tveganje za ponovitev je bilo ocenjeno kot nizko. V centru OBMP smo obravnavali tudi 18 primerov neželenih reakcij. V šestih primerih je šlo za sindrom ovarijske hiperstimulacije, kjer je bilo 6 pacientk sprejetih na bolnišnicno zdravljenje. V 12 primerih pa je prišlo do mocnejše venozne krvavitve, a hospitalizacija ni bila potrebna. Ugotavljamo, da je treba zaradi boljše ozavešcenosti organizirati dodatno izobraževanje na temo histovigilance in porocanja o neželenih dogodkih, saj je možno, da je sporocanje podatkov glede vigilancnih primerov nekoliko podcenjeno. Graficni prikaz števila neželenih dogodkov in reakcij od 2009 do 2019 18 16 14 12 10 8 6 4 2 0 LEGENDA Neželene reakcije Neželeni dogodki OBJAVE IN PREDAVANJA NA KONFERENCAH Pregledni in izvirni znanstveni clanki • Berzelak, N., Avsec, D., Kamin, T. (2019). Reluctance and willingness for organ donation after death among the Slovene general population / Zadržki in pripravljenost darovati orga­ne po smrti med splošno javnostjo v Sloveniji. Zdravstveno varstvo / Slovenian journal of public health, 58(4): 155–163. Dostopno na: https://content.sciendo.com/view/journals/sjph/58/4/article-p155.xml. • Lušicky, P., Avsec, D. (2019). Vloga zavoda Republike Slovenije za presaditve organov in tkiv Slovenija-transplant v donorskem programu. Zdravniški vestnik, 88(1–2): 3–20. Dostopno na: https://vestnik.szd.si/index.php/ZdravVest/article/view/2833. • Avsec, D. (2019). Darovanje in pridobivanje delov cloveškega telesa za namen zdravljenja. V Kremžar, B., Voga, G., Grosek, Š. (ur.), Intenzivna medicina: ucbenik. Ljubljana: Sloven-sko združenje za intenzivno medicino (SZIM), str. 991–997. Strokovni clanki • Avsec, D. (2019). Pravni in organizacijski vidiki transplantacijske dejavnosti v Sloveniji. V Buturovic-Ponikvar, J. (ur.), Zbornik predavanj strokovnega simpozija Eticni izzivi pri tran­splantaciji organov (str. 45–53). Ljubljana: Univerzitetni klinicni center Ljubljana. • Gadžijev, A. (2019). Novi trendi v transplantacijski medicini – darovanje po zaustavitvi srca in sprejem v enoto intenzivne terapije z namenom kasnejšega darovanja organov in tkiv. V Buturovic-Ponikvar, J. (ur.), Zbornik predavanj strokovnega simpozija Eticni izzivi pri trans-plantaciji organov (str. 71–74). Ljubljana: Univerzitetni klinicni center Ljubljana. • Uštar, B. (2019). Donorska in transplantacijska dejavnost v letu 2018. Transplant: glasilo Slovenskega društva Transplant, junij 2019: 4–8. • Uštar, B. (2019). Statisticni podatki v letu 2019. Transplant: glasilo Slovenskega društva Transplant, december 2019: 4. • Šimenc, J., Avsec, D. (2019). Eno leto od vzpostavitve elektronske opredelitve o posmrtnem darovanju organov in tkiv. Transplant: glasilo Slovenskega društva Transplant, december 2019 : 5–7. • Šimenc, J., Avsec, D. (2019). Daj življenju priložnost. Ledvica: Glasilo Zveze društev ledvic­nih bolnikov Slovenije, december (3): 5–6. • Uštar, B. (avtor, ur.), Šimenc, J., Gadžijev, A., Cebulc, G., Jakovac, J., Avsec, D. (ur.). (2019). Daj življenju priložnost: donorska in transplantacijska dejavnost v Sloveniji v letu 2018. Ljubljana: Zavod RS za presaditve organov in tkiv Slovenija-transplant. Dostopno tudi na: http://www.slovenija-transplant.si/uploads/media/TRANSPLANT_BROSU RA__2018_SLO_EN.pdf. • Darovanje organov in tkiv za namen zdravljenja. V Sotler, R. (ur.). Osnove prve pomoci: Prirocnik za usposabljanje kandidatov za voznike motornih vozil. Ljubljana: Rdeci križ Slo­venije, str. 198–199. Predavanja na konferencah (v kronološkem redu) • Šimenc, J.: The role of (new) media in raising social awareness in organ and tissue donati­ on. Eudonorgan – Social awareness event, Budimpešta, 14. 1. 2019. • Šimenc, J., Avsec, D.: Creating good reputation on Facebook: the case of Slovenia-trans­plant. 5th ELPAT congress Developing dialogue, pioneering practice, Krakow, 26.–29. 4. 2019. • Avsec, D.: Obstacles in transplant medicine in the ICU. 28. Mednarodni simpozij intenzivne medicine, Bled, 31. 5.–1. 6. 2019. • Gadžijev, A.: New trends in transplant medicine. 28. Mednarodni simpozij intenzivne medici­ne, Bled, 31. 5.–1. 6. 2019. • Šimenc, J.: Social media as a tool to inform publics on organ donation. 28. Mednarodni simpozij intenzivne medicine, Bled, 31. 5.–1. 6. 2019. • Avsec, D.: Organizacijski in pravni okvir transplantacije organov v Sloveniji. Eticni izzivi pri transplantaciji organov, UKC Ljubljana, Ljubljana, 7. 6. 2019. • Gadžijev, A.: Srcna in cirkulacijska smrt. Eticni izzivi pri transplantaciji organov, UKC Ljublja­na, Ljubljana, 7. 6. 2019. • Uštar, B., Avsec, D.: Introducing E-registration in Slovene donor registry. 19th ESOT con­gress Inspiring minds, driving progress, Kopenhagen, 15.–19. 9. 2019. • Avsec, D. & Kušar, B.: Slovenija-transplant – primer dobre prakse. Microcop IT konferenca, Brdo pri Kranju, 15. 10. 2019. • Šimenc, J. & Avsec, D.: Medicinska antropologija v medicinski praksi (vabljeno predavanje). Zdravje in družba: Interdisciplinarno raziskovanje zdravja, bolezni in zdravljenja (znanstvena konferenca ob 100-letnici UL), Filozofska fakulteta Univerze v Ljubljani, Ljubljana, 24. 10. 2019. • Avsec, D.: General aspects of organ donation and transplantation; Communication in the ICU and Declaration of Death; Public Education on Organ Donation 3rd International Train­ing Course in Transplant Coordination, Istanbul, 25.–29. 11. 2019. • Šimenc, J.: Using digital media tools for donation professionals. 3rd International Training Course in Transplant Coordination, Istanbul, 25.–29. 11. 2019. • Avsec, D.: Social significance of organ donation (vabljeno predavanje). China International Organ Donation Conference, Kunming (Kitajska), 7. 12. 2019. VIRI • Spletna stran Zavoda Slovenija-transplant: http://www.slovenija-transplant.si/. • Spletna stran Zavoda RS za transfuzijsko medicino: http://www.ztm.si/register-darovalcev/slovenija-donor/. • Zakon o pridobivanju in presaditvi delov cloveškega telesa zaradi zdravljenja (ZPPDCT), Ur. l. RS, št. 56/2015. • Council of Europe Convention against Trafficking in Human Organs (CM, 9. 7. 2014). • Spletna stran Eurotransplanta: http://www.eurotransplant.org/cms/. • Spletna stran European Directorate for the Quality of Medicines and Healthcare EDQM: https://www.edqm.eu/. • Guide to the Quality and Safety of Organs for Transplantation. European Committee (Partial Agreement) on Organ Trans­plantation (CD-P-TO), European Directorate for the Quality of Medicines & Health Care, Strasbourg; 7th ed. 2018. • Guide to the Quality and Safety of Tissues and Cells for human application. European Committee (Partial Agreement) on Or­gan Transplantation (CD-P-TO), European Directorate for the Quality of Medicines & Health Care, Strasbourg; 4th ed. 2019. • The Madrid Resolution on Organ Donation and Transplantation: https://www.edqm.eu/sites/default/files/article_the_madrid_ resolution_on_organ_donation_and_transplantation_transplantation_journal_june_2011.pdf. • Razvoj Transplantacijske medicine v Sloveniji: programi, smernice in perspektive. Urednici Danica Avsec in Zvonka Zupanic Slavec; ilustracije Radko Oketic. Ljubljana: Zavod RS za presaditve organov in tkiv Slovenija-transplant; Celje: Celjska Mohorjeva družba: Društvo Mohorjeva družba, 2016. • Donorski program: Postopki za izvajanje v donorskih bolnišnicah. Avtorji: Andrej Gadžijev, Danica Avsec. Ljubljana: Zavod RS za presaditve organov in tkiv Slovenija-transplant. Ljubljana, 2018. • Preliminary numbers 2019, IRODaT (International Registry in Organ Donation and Transplantation), www.irodat.org. • Spletna stran projekta EUDONORGAN: http://eudonorgan.eu/. • Buturovic-Ponikvar, J (ur.), Zbornik predavanj strokovnega simpozija Eticni izzivi pri transplantaciji organov. Ljubljana: Univerzitetni klinicni center Ljubljana. Donation and transplantation activity in Slovenia in 2019 72 Introductory words Our annual publication »Give Life a Chance« presents statistical data and key highlights of donation and transplantation activity in 2019. The data are set out clearly within the international context and a broader timeframe to ensure better understanding of the success achieved by the national programmes. In the last year, all Eurotransplant member countries saw a slight downward trend in their donation and transplantation programmes. The reorganisation of organ allocation has unexpectedly had negatively effects for small countries like Slovenia. The biggest decline was observed in the ki­dney transplant programme, although there were plans to eliminate deficiencies in early 2020. Nevertheless, we have seen amazing achievements in the lung and heart transplant programmes. Moreover,with 21.14 donors per million people, Slovenia is still classified among the top countries in terms of its deceased donation programme. Every instance of donation and transplantation reminds us once again such treatment is very complex and can only be provided based on a collective, well-coordinated and comprehensive approach. I would like to thank all the donor centres, transplantation teams and all the visible and less visible members, including every donor who has participated or is participating in the natio­nal donor and recipient programme. You are warmly invited to read our publication, which is intended for the broadest readership. Chief Phys. Danica Avsec, MD, Councillor, Director of the Slovenija-transplant Institute and responsible physician for donation activity The Slovenija-transplant institute Since 2002 the Institute of the Republic of Slovenia for the Transplantation of Organs and Tissues Slovenija-transplant has been the central national expert institution for connecting, co-ordinating, promoting and supervising donation and transplant activity in Slovenia. Established in 1998, Slo­venija-transplant is the primary co-ordination office of the national transplantation network. The national network consists of 11 donor hospitals across Slovenia, the Transplantation Centre at the Ljubljana University Medical Centre, and the Tissue Typing Centre within the Blood Transfusion Centre of Slovenia. It operates the donor and recipient programme, while also ensuring that medical treatment with organ transplantation is possible for all who need it. The national network operates continuously and its expert teams are in a state of readiness 24 hours a day, every day of the year. Since 2000 Slovenia has been a member of Eurotransplant, a non-profit organisation for organ and tissue exchange. After meeting the demanding entry criteria, it was the first country in the region to join the group of five successful countries in the area of transplantation, i.e. Germany, Austria, Belgium, Luxembourg and the Netherlands. In 2002, Slovenija-transplant signed a co-operation agreement with Eurotransplant. Today, Eurotransplant, with its registered seat in Leiden in the Netherlands, brings together 8 countries and over 137 million inhabitants. This membership is important for our patients because, upon joining Eurotransplant, the chances of their survival and transplant treatment outcomes have improved considerably, especially for life-threatening condi­tions like acute heart and liver failure and other special cases (e.g. children, hypersensitive pati­ ents). Thanks to our co-operation, the waiting lists have been shortened significantly, the national transplant programmes are fully operating and we have also introduced combined transplants. First and foremost, we have been able to ensure greater donor–recipient tissue compatibility. Tissue incompatibility can make finding an appropriate organ for certain patients impossible in Slovenia. In 2020, we plan to celebrate our impressive 20th anniversary of our successful co-operation with Eurotransplant by organising a series of events. SLOVENIJA-TRANSPLANT INSTITUTE Since being established, the Institute has been constantly developing in line with international guidelines. We strive to create an educated and motivated professionals and, by way of multi-pronged communication, consistently increase the public’s trust in transplantation medicine. Our membership in international professional committees and participation in European projects has given us an equal footing in the international arena, including as active co-creators of strategies, development and expert training in international donation and transplant activities. We continue to set an internationally recognised example of how a national donor programme should be orga­nised and managed. In its management and leadership of activities for procuring and using parts of the human body for medical treatment purposes, Slovenija-transplant consistently complies with the legislation, European directives and adopted international conventions. We ensure that national legislation and expert protocols arepromptly updated. Any changes we introduce are based on unanimously adopted expert decisions, critical social considerations as well as the principles of medical ethics and deontology. The key guidelines of our Institute’s operations include: self-sufficiency I patient equality and safety I optimal effectiveness I quality I traceability I professionalism I non-commercialism I trans­parency I voluntary donation I prevention of abuse. Since being established, Slovenia-transplant’s Director has been Chief Phys. Danica Avsec, MD, Councillor and the responsible physician for donation activity. The Institute operates under the auspices of the Ministry of the Republic of Slovenia for Health. In 2019, the Institute employed 9 full-time staff and was cooperating with 102 people under contract in the donation programme. www.slovenija-transplant.si @SloTransplant Achievements and highlights of 2019 10,000 on the register of designated persons At the end of the year, almost 10,000 people were included on the register of designated after­ -death organ and tissue donors. By the first days of January 2020, this figure had already been exceeded. In early January, designated persons register included 10,137 people, accounting for 0.57% of the population older than 15 years. In 2020, we will continue our activities of raising the general public’s awareness and encouraging people to become designated donors, with a stress on electronic channels via the www.e-uprava.si portal. The possibility of submitting a statement for or against organ donation through the eAdministration web portal was introduced in November 2018 so as to simplify the procedure. The next year, 566 people had registered electronically, slightly less than one-half of all designations made in 2019. National lung transplant programme sees outstanding results at the Ljubljana University Medical Centre In 2019, the excellent multidisciplinary team in the national programme for lung transplant treat­ment accomplished extraordinary results. After the programme was revived last year in the Trans­plantation Centre of the Ljubljana UMC, 10 complex transplantations of both lung lobes were suc­ cessfully performed, whereas in one case the transplantation for a Slovenian paediatric patient was performed by the Vienna University Medical Centre. In all cases, patient preparation before the lung transplant and post-operative care are always performed by relevant departments of the Ljubljana UMC. We would like to congratulate everyone involved for their outstanding work! 100% consent for donation and 10 actual donors at the Maribor University Medical Centre In 2019, the team of the Maribor UMC donor hospital, with 13 potential and 10 actual donors, continued its good work within the national donor network. Of eight (utilised) donors, at least one organ was transplanted. Above-average results were also achieved in terms of 100-percent approval by relatives of the deceased person about donation. We wish to thank all of our colleagu­es in the donor programme for their commitment and congratulate them on their outstanding work! Successfully completed EUDONORGAN EU project In 2019, we successfully completed our participation in the 3-year European EUDONORGAN project (Training and social awareness for increasing organ donation in the European Union and neighbouring countries), financed by the European Commission under a special agreement. The project’s purpose was attained, namely the promotion of a positive attitude among society to organ donation, multidisciplinary and regional connections among all stakeholders as well as a comparison of good practices. Besides organisations from Spain, Croatia and Italy, Slovenija-transplant was the key partner in the project which encompassed activities aimed at educating health professionals and raising awareness among the general public. Two interdisciplinary sym­posiums on organ donation led by Slovenija-transplant were organised in 2019, in Budapest and Stockholm. We actively participated in the central seminar in the European Parliament in Brus­sels, addressing political authorities. It became clear just how important international connections are for the promotion of organ donation. Joint campaigns bring about more practical and visible results, although there are still too many individual activities at the local level whose effects later fade away. About donor medicine at the international symposium on intensive care medicine With a theme-based set on donation medicine, on 1 June 2019 members of Slovenija-transplant participated at the 28th international symposium on intensive care medicine held in Bled, Slo­venia, and organised by the Slovenian Association of Intensive Care Medicine. Together with colleagues from Poland and Croatia, we presented the applicable work guidelines, the biggest obstacles to transplant activity in intensive care units and the possibilities for developing a national deceased donation programme, among others, the donation after circulatory death. Findings of the »Social Aspects of Organ Donation in Practice« research project Which impediments do people face when deciding whether to declare as a donor given that 85% of them declarately support treatment with organ transplantation? How to encourage the public to actively declare as donors and speak about it? Which public awareness strategies are the most successful? These are some of the key questions we sought answers to in the applied research project “Social Aspects of Organ Donation” (co-financed by the Slovenian Research Agency – ARRS) in co-operation with the Faculty of Social Sciences at the University of Ljubljana, and the National Institute of Public Health. Countrywide field research about views on organ donation was conducted and recommendations for public communication issued (see Berzelak, Avsec, Kamin 2019). The project was successfully completed and the latest research findings and results inclu­ded in our communication activities. Education and certification of European transplant coordinators (CETC) Chief Phys. Danica Avsec, as President of the international Board of Transplant Co-ordinators (BTC), which operates under the auspices of the European UEMS Surgery, organised in co-ope­ration with the Turkish Transplant Foundation a preparatory course for an exam for the certifica­tion of European transplant co-ordinators (CETC). The course was run on 1 and 2 August 2019 in Istanbul. Chief Phys. Danica Avsec and Andrej Gadžijev gave the lectures. The course was also attended by two Slovenian CETC candidates who later passed the exam with flying colours. The exam was held on 14 September in Copenhagen as part of the European Society for Organ Transplantation (ESOT) congress. On ethical issues in transplantation medicine On 7 June 2019, an international symposium called »Ethical Challenges in Organ Transplantation« was organised on the premises of the Ljubljana UMC. A number of bad practices from abroad were brought to light at the event. In our papers, written by Chief Phys. Danica Avsec and Andrej Gadžijev, we presented Slovenija-transplant’s priority areas, including the ethical bases and gui­delines we observe while combating trafficking and introducing changes to donation programmes. We demonstrated how good organisation and compliance with high ethical criteria underpin safe, high-quality and transparent transplantation treatment. In Slovenia, any abuse of the system is excluded and criminally prosecuted. Chief Phys. Avsec is an active member of international bod­ies, thereby contributing to the prosecution of inadmissible violations of human rights in the form of trafficking in human organs as well as to a more ethical stance in the global transplantation community. Solid organs NATIONAL WAITING LIST FOR ORGAN TRANSPLANTATION The waiting list is a list of patients in need Status of the national waiting list on 31.12.2019 for a medical treatment with organ trans-(patients with active status) plantation. The indications for transplanta­ tion are specific to each organ/tissue/cell. All patients in the Republic of Slovenia have the same possibility of being included on the list of recipients and have equal ac­cess to the transplantation. By the end of 2019, 156 patients were waiting for an or­gan transplant, namely the highest number thus far, mostly due to more patients wait­ing for a kidney transplant. The average waiting period for all organs is relatively short compared to other countries. On av­erage, Slovenian patients wait for a heart, liver or kidney transplant for less than 1 year. In 2019, 134 Slovenian patients were add­ed on the waiting list: 80 for a kidney, 27 for a heart and 27 for a liver transplant. LEGEND Kidney (95) Kidney and pancreas (1) Heart (42) Liver (17) Kidney and liver (1) Source: http://statistics.eurotransplant.org/ Kidney Kidney and pancreas Kidney and liver Heart 95 1 1 42 Heart and liver Heart and kidney Liver Pancreas 0 0 17 0 TOTAL 156 patients 42 1 1 Status of the national waiting list in the 2000-2019 period (on 31.12.) Year Kidney Kidney and pancreas Kidney and liver Heart Heart and liver Heart and kidny Liver Pancreas TOTAL 2000 102 7 2 111 2001 101 8 4 113 2002 76 2 7 85 2003 75 9 8 92 2004 60 15 4 79 2005 81 14 9 104 2006 72 24 6 102 2007 83 1 30 9 123 2008 71 1 17 13 102 2009 52 18 1 15 86 2010 53 26 8 87 2011 68 34 10 112 2012 65 2 32 10 109 2013 47 1 30 7 85 2014 69 8 21 9 107 2015 50 8 42 1 18 1 120 2016 47 3 50 17 2 119 2017 51 2 42 18 113 2018 72 1 48 19 140 2019 95 1 1 42 17 156 Source: http://statistics.eurotransplant.org/ 110 100 90 80 70 60 50 40 30 20 10 Trends in patient numbers on the waiting list, NUMBER OF DECEASED DONORS In 2019, Slovenian donor hospitals acquired 44 actual deceased donors* who were medically su­itable and for whom consent had been obtained from their relatives. Data at the beginning show the number of actual deceased donors in Slovenia compared to other countries around the world. Below are details on the number of utilised deceased donors*, which means that at least one organ was transplanted from each donor. Compared to other Eurotransplant members, in 2019 Slovenia was again ranked fourth in terms of the number of utilised deceased donors per million people. Number of actual deceased donors (DD) per million people (PMP) in Slovenia in 2019 and a comparison with other countries Country No. of DD/PMP2019 1. Spain 48,9 2. ZDA 36,88 3. Croatia 34,63 4. Portugal* 33,63 5. France 33,25 6. Belgium 30,4 7. Czech Republic 27 8. Finland 26,36 9. Belrus 26,2 10. Malta* 25 Country No. of DD/PMP2019 11. England 24,88 12. Italy 24,7 13. Austria 23,8 14. Urugvay 22,86 15. Avstralia* 22,17 16.Slovenija 21,14 17. *Canada** 20,56 18. Argentina* 19,6 19. Island 19,29 20. Sweden 19 Country No. of DD/PMP2019 21. Estonia 18,8 22. Norway 18,78 23. Lithuania 18,7 24. Hungary 18,42 25. Switzerland 18,4 26. Ireland 17,35 27. Denmark 17,25 28. Brazil* 16,73 29. Netherlands 14,93 30. Slovakia* 14,35 * Data from 2018, ** Total utilized donors Country No. of DD/PMP2019 31. New Zealand* 13,19 32. Poland 13,1 33. Latvia* 12,63 34. Luksenbourg* 11,67 35. Cuba* 11,3 36. Iran* 11,26 37. Germany 11,2 Country No. of DD/PMP2019 38. Israel 10,8 39. Chile 10,4 40. South Korea 8,68 41. Columbia* 8,04 42. Ecuador* 7,87 43. Turkey 7,54 44. Costarika* 7 Country No. of DD/PMP2019 45. Cyprus 6,86 46. Kuwait 6,75 47. Greece 5,5 48. Rusia* 4,49 49. China* 4,43 50. Mexico* 4,39 51. Moldova 4,1 * Data from 2018 Number of actual deceased donors (DD) per million people (PMP) in Slovenia in 2019 DD/PMP 50 40 30 20 10 0 SPA ZDA CRO POR FRA BEL CZ.R. FIN BLR MAL UK ITA AUS URU AUT SLO CAN ARG ISL SVE EST NOR LIT HUN SWI IRL DEN BRA NET SL N.Z. POL LAT LUX CUB IRA Country No. of DD/PMP2019 Country No. of DD/PMP2019 Country No. of DD/PMP2019 52. Hong Kong 3,86 59. Dominic. republic 2,2 66. North Macedonia* 0,48 53. Saudi Arabia 3,77 60. UAE* 1,1 67. Gvatemala* 0,29 54. Bulgaria 3,71 61. Japon* 0,75 68. Jordania* 0,21 55. Thailand 3,66 62. Trinidad & Tobago* 0,72 69. Nicaragua* 0,15 56. Romania* 3,32 63. Panama* 0,71 70. Filipins 0,087 57. Quatar* 2,59 64. India* 0,65 58. Peru 2,3 65. Malaysia 0,53 * Data from 2018 Source: IRODaT (International Registry in Organ Donation and Transplantation) www.irodat.org Preliminary numbers 2019 DD/PMP 50 40 30 20 10 0 GER ISR CIL S. CO. KOL ECV TUR KOS CIP KUW GRE RUS CHI MEX MOL H.K. S. AR. BOL TAI ROM QAT PER DO.R. UAE JAP T&T PAN IND MAL N.MA. GUA JOR NIC FIL Number of utilised deceased donors (DD) per million people (PMP) in Slovenia in 2019 and a comparison with all Eurotransplant countries Country Slovenia (SLO) Eurotransplant (ET) Number of DD 38 2.042 DD/PMP 18,3 14,5 Number of utilised deceased donors per million people (DD/PMP) and a comparison with other Eurotransplant countries in 2019 ET Country Number of DD/PMP in 2019 1. Croatia (CRO) 31,4 2. Belgium(BE) 27,2 3. Avstria (AT) 20,3 4. Slovenia (SLO) 18,3 5. Hungary (HU) 18,2 6. Netherlands (NL) 14,5 7. Germany (DE) 10,8 8. Luxembourg (LU) 8,1 Source: http://statistics.eurotransplant.org/ Number of utilised deceased donors (DD) and number of utilised deceased donors per million people (DD/PMP) in Slovenia in the 1998-2019 period Year Number of DD Number of DD/PMP 1998 27 13,6 1999 26 13,1 2000 22 11,1 2001 23 11,6 2002 35 17,6 2003 28 14 2004 36 18 2005 21 10,5 2006 30 15 2007 22 10,9 2008 36 17,8 2009 33 16,2 2010 40 19,5 Year Number of DD Number of DD/PMP 2011 31 15,1 2012 46 22,4 2013 45 21,9 2014 43 20,9 2015 53 25,7 2016 41 19,9 2017 39 18,9 2018 40 19,4 2019 38 18,3 TOTAL 755 16,9 Source: http://statistics.eurotransplant.org/ Number of utilized deceased donors (DD) and number of utilized deceased donors per million people (DD/PMP) in Slovenia in the 1998-2019 period 30 25 20 15 10 5 0 * The critical Pathway for Organ Donation POSSIBLE DECEASED ORGAN DONOR A patient with a devastating brain injury or lesion OR a patient with circulatory failure AND apparently medically suitable for organ donation Donation after Circulatory Death (DCD) Treating physician to Identify/refera potential donor Donation after BrainDeath (DBD) POTENTIAL DCD DONOR a. A person whose circulatory and respiratory func­tions have ceased and resuscitative measures are not to be attempted or continued. OR b. A person in whom the cessation of circulatory and respiratory functions is anticipated to occur within a time frame that will enable organ recovery. Reasons why a potential donor does not become a utilized donor SYSTEM - Failure to identify/refer a potential or eligible donor - Brain death diagnosis not confirmed (e.g. does not fulfil criteria) or completed (e.g. lack of tehnical resources or clinician to make diagnosis or perform confirmatory tests) - Circulatory death not declared within the appropriate time frame - Logistical problems (e.g. no recovery team) - Lack of appropriate recipient (e.g. child, blood type, serology positive) DONOR/ORGAN - Medical unsuitability (e.g. serology positive, neoplasia) - Haemodynamic instability/unanticipated cardiac arrest - Anatomical, histological and/or functional abnormalities of organs - Organs damaged during recovery - Inadequate perfusion of organs or thrombosis PERMISSION - Expressed intent of deceased not to be donor - Relative’s refusal of permission for organ donation - Refusal by coroner or other judical officer to allow donation for forensic reasons POTENTIAL DBD DONOR A person whose clinical condition is suspected to fulfill brain death criteria. ELIGIBLE DCD DONOR A medicaly suitable person who has been declared dead based on the irreversible absence of circulatory and respiratory functions as stipulated by the law of the relevant jurisdiction within a time frame that enables organ recovery. ELIGIBLE DBD DONOR A medicaly suitable person who has been declared dead based on neurologic criteria as stipulated by the law of the relevant jurisdiction. ACTUAL DCD DONOR A consented eligible donor: a. In whom an operative incision was made with the intent of organ recovery for the purpose of transplantation. OR b. From whom at least one organ was recovered for the purpose of transplantation. ACTUAL DBD DONOR A consented eligible donor: a.In whom an operative incision was made with the intent of organ recovery for the prupose of transplantation. OR b. From whom at least one organ was recovered for the purpose of transplantation. UTILIZED DCD DONOR An actual donor from whom at least one organ was transplanted. UTILIZED DBD DONOR An actual donor from whom at least one organ was transplanted. The »dead donor rule« must be respected. That is, patients may only become donors after death, and the recovery of organs must not couse a donor´s death. Source: The Madrid Resolution on Organ Donation and Transplantation REGISTER FOR DONATION DECLARATIONS Every Slovenian citizen has the right and possibility during their lifetime to decide to donate their organs and tissues. This decision is formally confirmed when it is entered in the national register of designated persons, set up back in 2004. The donor statement may be signed at many authorised donor registration points around Slo­venia (a detailed list is published at www.slovenija-transplant.si) or electronically using a digital signature on the eAdministration portal (https://e-uprava.gov.si/). Since June 2017, a declaration against making organ donation is also possible. In 2019, we collected a total of 1.254 declarations (1.245 FOR and 9 AGAINST), of which 566 were submitted electronically. As at 31.12.2019, 9.869 declarations were listed in the register (9.855 FOR and 14 AGAINST). Number of declarations in the register, by year, in the 2004-2019 period Year No. of declarations 2004 declarations 2005 228 2006 309 2007 386 2008 460 2009 513 Year No. of declarations 2010 382 2011 381 2012 312 2013 300 2014 740 2015 632 Year No. of declarations 2016 594 2017 1.523 2018 1.764 2019 1.254 TOTAL 9.869 Source: archive of Slovenija-transplant Number of declarations regarding donation in the register, by year, in the 2004-2019 period 1800 1650 1500 1350 1200 1050 900 750 600 450 300 150 0 PERCENTAGE OF DONATION REFUSALS A conversation about donation with the close relatives of a potential deceased donor (PDD) is conducted in every case when the donation of organs for transplantation is feasible. It is only after the death has been confirmed and the time of death registered that the transplantation co-ordina-tor checks the register to see whether the deceased was a designated after-death donor. Despite knowing about the designation, the central transplantation co-ordinator always holds a conversa­tion with the deceased person’s close relatives about donation. During this conversation, they try to find out what the deceased person's position was regarding after-death organ donation. If their intention is unknown, the close relatives make the decision. All procedures are carried out with a high level of sensitivity, understanding of the extremely difficult emotional circumstances and in line with the legislative provisions and the medical doctrine. In 2019, the rate of refusals was significantly lower than in 2018. Donation was refused by 23% of such relatives. As the death of a close relative is a difficult experience for anyone, Slovenija-transplant offers the donor’s relatives an opportunity to be given grief counselling by a professionally trained and experienced expert. Percentage of donation refusals in the 1998-2019 period Source: archive Slovenija-transplant Year % 1998 21 1999 30 2000 37 2001 36 Year % 2002 22 2003 23 2004 30 2005 19 Year % 2006 20 2007 15 2008 20 2009 15 Year % 2010 20 2011 14 2012 31 2013 31 Year % 2014 20 2015 19 2016 24 2017 17 Year % 2018 34 2019 23 Percentage of donation refusals in the 1998-2019 period 40 30 20 10 OPERATIONS OF THE DONOR CENTRES Eleven donor hospitals or centres are active in the Slovenian donation programme: the Ljubljana UMC and Maribor UMC and the general hospitals in Celje, Murska Sobota, Nova Gorica, Izola, Ptuj, Novo mesto, Slovenj Gradec, Jesenice and Brežice. The following activities are performed in a donor centre: • identifying potential deceased donors; • performing diagnostics of brain death; • establishing the suitability of organs and tissues for removal and transplantation; • informing the deceased person’s close relatives about the possibility of organ donation and obtaining their consent; • preserving the functioning of deceased donors’ organs - in intensive care and during organ removal; and • participating in organ - and tissue-removal procedures performed by Slovenian and foreign teams of surgeons. The highest number of donors is provided by the Ljubljana UMC with the greatest number of beds in intensive care units. In 2019, 15 utilised deceased donors were procured there. Good results were also achieved by the UMC Maribor where in 2019 they procured 8 utilised deceased donors (out of 10 actual donors) and by Celje GH with 6 utilised donors (out of 7 actual donors). Jeseni­ce GH and Nova Gorica GH stood out among the smaller donor hospitals with 3 utilised donors each. Izola GH, Novo mesto GH and Brežice GH each procured one utilised deceased donor in 2019. Number and share of utilised deceased donors in individual donor centres (DC) in 2019 2,5% 2,5% 2,5% Ljubljana UMC Maribor UMC *NICU – Neurological Intensive Care Unit, Celje GH CICU – Central Intensive Care Unit, Jesenice GH CDIIM – Clinical Department of Internal Intensive Medicine, CVIT – Cardio Vascular Intensive Therapy, Nova gorica GH CDPSIT – Clinical Department of Paediatric Surgery Izola GH Source: archive Slovenija-transplant and Intensive Therapy Donor centre Number of DD Share in % Ljubljana UMCTOTAL 15 39,5 of which NICU* 5 of which CICU 7 of which CDIIM 1 of which CVIT 1 of which CDPSIT 1 Maribor UMC 8 21 Celje GH 6 16 Jesenice GH 3 8 Nova Gorica GH 3 8 Izola GH 1 2,5 Novo mesto GH 1 2,5 Brežice GH 1 2,5 TOTAL 38 100 Novo mesto GH Brežice GH Number of utilised deceased donors in donor centres in the 1998-2019 period Source: archive Slovenija-transplant Year LJ UMC MB UMC CE GH MS GH NG GH Izola GH Ptuj GH Jesenice GH NM GH SG GH Brežice GH 1998 / 99 16/13 8/7 0/1 1/0 1/3 1/0 0/0 0/2 0/0 0/0 0/0 2000 8 10 1 1 1 1 2001 13 8 1 1 2002 17 15 1 1 1 2003 12 9 2 1 1 1 2 2004 17 10 2 2 2 1 1 1 2005 13 3 1 1 1 2 2006 17 7 2 1 1 1 1 2007 9 8 2 1 1 1 2008 18 9 5 2 1 1 2009 23 1 5 2 1 1 2010 26 8 2 2 1 1 2011 21 6 2 1 1 2012 22 8 9 3 1 2 1 2013 21 8 7 5 3 1 2014 31 4 3 1 1 2 1 2015 25 11 10 2 1 1 1 1 1 2016 28 2 7 1 2 1 2017 22 7 4 2 1 1 2 2018 18 13 4 2 1 1 1 2019 15 8 6 3 1 3 1 1 TOTAL 405 170 76 23 24 16 13 13 7 6 2 Number of utilized deceased donors in donor centres in the 1998-2019 period 60 50 40 30 20 10 0 755 deceased donors in SLO from 1998 to 2019 27 26 22 23 35 28 36 21 30 22 36 33 40 31 46 45 43 53 41 39 40 38 LEGEND Ljubljana UMC Maribor UMC Celje GH Murska Sobota GH Izola GH Jesenice GH Nova Gorica GH Ptuj GH Novo mesto GH Slovenj Gradec GH Brežice GH 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 Potential and realisation in donor hospitals (analysis completed for 2018) The donation potential of an individual donor hospital is expressed as the percentage share of brain-dead donors of the total number of deceased persons in the intensive care unit (ICU). It in­dicates the number of deaths where the diagnostic of brain death was completed. The potential is directly associated with the identification of eligible donors in ICUs. Realisation in the donation process indicates the number of eligible donors (proven brain death) who became actual donors. It is expressed as the share of actual donors of the total number of deaths due to brain death in the ICUs. Source: archive Slovenija-transplant Donor hospital All deaths in the ICU PD ED *Potential (%) Available (%) AD Realisation (%) **Available (%) Ljubljana UMC 389 83 46 11.8 13.7 18 39 65 Maribor UMC 284 56 25 8.8 13.7 17 68 65 Celje GH 131 39 11 8.4 8.3 7 64 55 Murska sobota GH 70 14 5 7.1 8.3 2 40 55 Nova Gorica GH 90 17 2 2.2 8.3 1 50 55 Novo mesto GH 143 9 4 2.8 8.3 0 0 55 Izola GH 60 9 1 1.6 8.3 1 100 55 Jesenice GH 52 7 2 3.8 8.3 1 50 55 Slovenj Gradec GH 55 8 1 1.8 8.3 1 100 55 Ptuj GH 72 8 0 / 8.3 0 / 55 Brežice GH 47 5 1 2.1 8.3 0 0 55 ICU – intensive care unit, PD – potential donor, ED – eligible donor (proven brain death), AD – actual donor (relatives’ consent, organ removal) Potential – % of brain-dead patients in total number of deceased persons in the ICU = % ED/total deaths in the ICU Realisation – % of actual donors in total number of brain-dead patients = % AD/ED *As expected, a donor hospital’s potential is higher among hospitals which operate their own ne­urosurgical unit and can even reach up to 13.7 % (available potential). The Ljubljana UMC was quite close to its potential, whereas the Maribor UMC lagged behind its potential in 2018. In ho­ spitals without their own neurosurgical unit, the available donation potential reaches up to 8.3 %. This figure was exceeded in 2018 by the Celje GH, while Murska Sobota GH was relatively close. Most donor hospitals still lagged behind the available values in 2018, which shows we can further improve in the area of identifying eligible donors. Realisation mainly depends on the percentage share of absolute medical contraindications and refused donation by relatives in the period under scrutiny. ** Available realisation considers up to 20 % of absolute medical contraindications and up to 10 % of refused donation by relatives, while also distinguishing between donor hospitals with a neu­ rosurgical unit and those without one (10 % difference); other obstacles in the donor process in total account for up to 5 %. Thus, the available realisation for hospitals with a neurosurgical unit was calculated at 65 % and for those without such a unit 55 %. In 2018, the available realisation was exceeded in the Maribor UMC, Celje GH, Izola GH and Slovenj Gradec GH. Some deviations were found in low values of the potential, e.g. in Izola GH and Slovenj Gradec GH, where 100 % realisation was achieved in one case – there were no medical contraindications for donation and the relatives gave their consent. In hospitals where there were no proven brain deaths in 2018 and no actual donors, the potential and the realisation were both 0 % or non-measurable (/). List of authorised persons (i.e. hospital transplantation coordinators) in charge of the development, implementation and functioning of the donation programme in individual donor centres in 2019 Donor centre Transplantation coordinators Ljubljana UMC Chief Phys. Rade Stanic, MD, MSc Maribor UMC Tanja Kuprivec, MD Brežice GH Nataša Pirc, MD Celje GH Barbara Hudournik, MD Izola GH Damjan Polh, MD Jesenice GH Andraž Nastran, MD Murska Sobota GH Chief Phys. Daniel Grabar, MD Nova gorica GH Edyta Cerkini, MD Novo mesto GH Matej Godnic, MD Ptuj GH Chief Phys. Majda Šarman, MD Slovenj Gradec GH Rok Popic, MD 105 PROCURED SOLID ORGANS FOR THE PURPOSE OF MEDICAL TREATMENT The number of procured organs depends on the number of procured deceased donors, along with the age and any medical contraindications. In 2019, the number of procured organs of decea­sed donors was slightly lower than the year before. Data for 2019 and a comparison with previous years are given below. Number of procured organs of deceased donors in Slovenia in 2019 Kidney Heart Liver Lung Pancreas TOTAL 75 15 31 11 0 132 Source: archive of Slovenija-transplant LEGEND Kidney Heart Liver Lung Procured organs of deceased donors in Slovenia in the 2000-2019 period Source: archive of Slovenija-transplant Year Kidney Heart Liver Lungs (both lobes) Pancreas TOTAL 2000 43 14 17 4 13 91 2001 44 19 19 7 6 95 2002 66 28 22 11,5 11 138,5 2003 56 15 21 8 15 115 2004 70 12 25 3,5 6 116,5 2005 39 13 16 9 8 85 2006 59 16 21 7,5 6 109,5 2007 46 12 19 7 3 87 2008 71 11 31 9 2 124 2009 65 9 26 4 6 110 2010 80 20 37 13 8 158 2011 58 14 24 4 5 105 2012 89 25 39 8 5 166 2013 86 26 39 19 8 178 2014 80 16 38 11 2 147 2015 92 20 46 6 6 170 2016 68 13 39 13,5 2 135,5 2017 68 19 40 15 4 146 2018 79 17 34 9 3 142 2019 75 15 31 11 / 132 TOTAL 1.334 334 584 180 119 2.551 Procured organs of deceased donors in Slovenia in the 2000-2010 period LEGEND Kidney Heart Liver Lungs Pancreas Procured organs of deceased donors in Slovenia in the 2011-2019 period 2.551 procured organs of deceased donors in Slovenia in the 2000-2019 period LEGEND Kidney Heart Liver Lungs Pancreas TRANSPLANTED SOLID ORGANS There is one transplantation centre in Slovenia – the Ljubljana University Medical Centre – at which programmes for organ transplantation are carried out. The organ distribution system ensures equal access to medical treatment with organ transplantation for all Slovenian citizens. The tasks of the transplantation centre include: • preparing recipients for inclusion on the waiting list; • organ transplantation; and • treating and guiding patients after transplantation. Since 2014, the transplantation centre has been managed by the cardiovascular surgeon Dr. Ivan Kneževic, MD. In 2019, 95 organ transplants were performed. The most transplanted organ is the kidneys and we slightly exceed the average of Eurotransplant countries in terms of the number of all tran­splants from deceased donors per million people. Considerably higher is the number of transplan­ted hearts per million people, where in the past few years we have been a world leader. After relaunching the lung transplant programme in 2018, ten transplantations of both lung lobes were performed in the Ljubljana UMC in 2019. One lung transplantation for a Slovenian paedia­ tric patient was performed in the University Hospital in Vienna (AKH), where the majority of lung transplantations for Slovenian patients were performed till 2018. Pediatric transplantations are partly performed in the Ljubljana UMC and partly in nearby Europe­an transplantation centres (kidneys in the University Hospital Graz, Austria, and liver in Bergamo, Italy). The relevant departments in the Ljubljana UMC are in charge of treatment and preparation before organ transplantation as well as medical treatment and monitoring of the patient after transplantation. Transplanted solid organs from deceased donors in the Ljubljana UMC in 2019 and a comparison with Eurotransplant – absolute number and per million people (PMP) Kidney DD Heart Liver Pancreas Lungs TOTAL No. PMP No. PMP No. PMP No. PMP No. PMP No. PMP SLO 38 18,3 22 10,6 24 11,5 1 0,5 10 4,8 95 44,7 ET 3.191 23,0 668 4,8 1.571 11,5 156 1,2 1.375 5,1 6.961 44,1 Source: http://statistics.eurotransplant.org/ Transplanted solid organs from deceased donors in the Ljubljana UMC in 2019 and a comparison with Eurotransplant 25 20 15 10 5 0 LEGEND ET SLO Number of transplanted solid organs from deceased donors per million people (PMP) in Slovenia in 2019 and a comparison with the Eurotransplant countries ET country Kidney Liver Heart Pancreas Lung Number of transplantations/PMP in 2019 1. Belgija (BE) 33,9 22,8 7,3 1,8 9,9 72,3 2. Croatia (CRO) 31,4 30,2 9,3 1,2 70,2 3. Avstria (AT) 34,8 15,7 7,6 1,7 11,2 68,6 4. Slovenia (SLO) 18,3 11,5 10,6 0,5 4,8 44,7 5. Netherlands (NL) 26,0 9,7 2,2 1,7 6,1 44,4 6. Hungary (HU) 24,1 8,1 7,4 0,5 1,8 41,2 7. Germany (DE) 19,4 9,3 4,1 1,1 4,3 37,0 PMP 50 40 30 20 10 0 72,3 70,2 68,6 44,7 44,4 41,2 37,0 Source: http://statistics.eurotransplant.org/ LEGEND Kidney Heart Liver Pancreas Lungs BE CRO AT SLO NL HU DE Number of transplanted solid organs of deceased donors in Slovenia in the 1970-2019 period Source: archive of Slovenija-transplant Year Kidney Heart Liver Lungs* Pancreas TOTAL Od 1970 do 1985 1 1 1986 7 7 1987 18 18 1988 16 16 1989 14 14 1990 17 1 1 19 1991 11 11 1992 20 20 1993 4 1 5 1994 14 2 16 1995 10 3 1 14 1996 6 2 8 1997 19 6 1 26 1998 46 4 4 54 1999 37 7 9 3 56 2000 44 7 10 1 62 2001 47 4 9 1 61 2002 55 3 11 69 Year Kidney Heart Liver Lungs* Pancreas TOTAL 2003 43 3 9 2 57 2004 55 3 15 73 2005 28 5 13 2 48 2006 48 8** 8 2 66 2007 30 11 10 1 52 2008 52 6 22 4 84 2009 43 18 18 2 2 83 2010 61 19 23 3 1 107 2011 46 14 20 7 1 88 2012 62 29*** 27 2 120 2013 60 30 21 8 4 123 2014 55 33 31 3 122 2015 64 24 24 7 5 124 2016 44**** 31 27 10 5 117 2017 46**** 24 23 8 101 2018 54**** 23 27 7 3 114 2019 38 22 24 11 1 96 TOTAL 1.215 343 386 85 23 2.052 * All lung transplants for Slovenian patients were performed in AKH Vienna with the exception of 2003 (1 transplant performed in Ljubljana UMC) and 2018 (2 transplants performed in Ljubljana UMC). In 2019, ten transplantations of both lung lobes were performed in the Ljubljana UMC and one paediatric lung transplantation in the University Hospital in Vienna (AKH).** One heart from a Slovenian donor was transplanted to a Slovenian patient in Graz. *** One heart was transplanted, together with lungs, to a Slovenian patient in Vienna. **** In 2016, 2017 and 2018, two kidneys from a living donor were transplanted. The total number of transplanted kidneys in 2016 is therefore 46, in 2017 48 and in 2018 56. Number of transplanted solid organs of deceased donors in Slovenia in the 1970-2006 period 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 Source: archive of Slovenija-transplant LEGEND Kidney Heart Liver Lungs Pancreas Number of transplanted solid organs of deceased donors in Slovenia in the 2007-2019 period 2.052 transplanted solid organs of deceased donors in SLO in the 1970-2019 period 140 120 100 80 60 40 20 0 52 84 83 107 88 120 123 122 124 117 100 114 96 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 LEGEND Source: archive of Slovenija-transplant Kidney Heart Liver Lungs Pancreas THE SUCCESSFULNESS OF SLOVENIAN ORGAN TRANSPLANT PROGRAMMES Patient survival after a heart transplant From 1990 to the end of 2019, the Ljubljana UMC performed 343 heart transplants and another 22 in 2019. Eighteen (82 %) patients had an urgent and 4 (18 %) a regular tran­splant. According to Eurotransplant data, the Ljubljana UMC was again ranked in the top 10 (out of 42) largest heart transplant centres in the Eurotransplant area and may be com­pared by number of transplantations with the biggest centres in Germany, Belgium, Hunga­ry and Austria. The multi-year average (2009-2018) waiting period for an elective heart transplant was about 248 days (median: 67 days) and for an urgent heart transplant about 50 days (medi­an: 50 days). In 2019, the average waiting pe­ riod for an elective heart transplant was 452 days (median: 238 days) and for an urgent heart transplant 59 days (median: 50 days). The patient survival rates are comparable with those from the international reference register kept by the International Society for Heart and Lung Transplantation (ISHLT). Survival of adult heart transplant recipients in % (1990-2018, n = 321) 30-day survival One-year survival Five-year survival 92 % 85 % 77 % Source: Report on implementation of the programme for advanced heart failure and heart transplantation for 2018 (Cardiology Department, Ljubljana University Medical Centre) 100 75 50 25 0 % Patient survival after a kidney transplant In the period in which Slovenija-transplant has been a member of Eurotransplant (1 January 2000 - 31 December 2019), 983 kidneys of living and deceased donors have been tran­splanted. In the first post-transplantation ye­ar the clinical, biopsy-proven acute rejection of the transplant was reported in 12.7% of all patients. Some recipients had a transplanted kidney in combination with other organs (pancreas, liver, heart). In the 2013–2016 period, the median time until transplantation was 300 days. Based on Eu-rotransplant data for the 3-year period (2010– 2014), 55 % of patients were given a kidney transplant within the first year of being included on the waiting list, whereas after three years the respective figure is 80 %. According to Eurotransplant data for the 2000 -2014 period, the current 1-year and 5-year survival of Slovenian patients and grafts is abo­ ve the Eurotransplant members’ average and comparable with the most developed centres around the world. 100 95 90 85 80 75 70 65 60 % Survival of kidney transplant recipients and transplanted organs in % (2000-2019, n = 983) One-year survival Five-year survival Patients 98 % 93,5 % Transplanted organs 94% 86,7 % 98 94 93,5 86,7 One-year Five-year SURVIVAL LEGEND Patients Transplanted organs Source: Quality indicators of the Kidney Transplantation Centre (Department of Nephrology, University Medical Centre Ljubljana) Patient survival after a liver transplant Between 1995 and 2019, the University Medical Centre Ljubljana carried out 386 liver transplants. Of all patients with a liver transplant, 63 % needed the procedure due to cirrhosis of the liver, 10 % acute liver fai­lure, 9.7 % liver cancer, 9.1 % cholestatic/ congenital diseases, and 2.1 % due to me­tabolic liver disease. Other reasons for the transplant (5.9 %) include benign liver tu­mour or polycystic liver disease and Budd­-Chiari syndrome. The average waiting period for a liver trans­ plant in 2019 was about 254 days (median: 115 days). Survival of liver transplant recipients and transplanted organs in % (1988-2018, n = 291 (patients) and n = 323 (transplanted organs))* One-year survival Three-year survival Five-year survival Patients 86 % 81 % 79 % Transplanted organs 79 % 74 % 71 % Source: ELTR (European Liver Transplant Registry, SLLUBL: Specific Analyses December 2018) * Data for 2019 will be available in mid 2020; published here are data for 2018 90 SURVIVAL 85 80 75 70 65 60 % One-year Three-years Five-years Patients Transplanted organs LEGEND Source: Clinical Department of Gastroenterology, University Medical Centre Ljubljana Patient survival after a pancreas transplant (in combination with kidney) In the period from February 2009 to 31 Decem­ber 2019, 22 pancreas transplants were carried out, all concurrently with kidney. In 2019, one combined pancreas and kidney transplantation was performed. After one year, 17 pancreases were functio­ning, whereas 5 were removed in the early post-transplant period. The 1-year survival of a pancreas graft was 77.8 % (n=18) and the 3-year survival was also 77.8 % (n=18). The 1-year and 3-year survival of a kidney graft in patients with a combined pancreas-kidney transplant was 94.4 %. One year, 3 years and 5 years after transplant all pancreas-transplant recipients were alive, leading to a 1-year, 3-year and 5-year survival rate of 100 %. All patients whose pancreas was functioning after 1 year also had a functioning pancreas on 31 December 2019, meaning they were insu­lin-independent. One patient died 6 years after the transplant due to a cardiogenic shock; his pancreas and kidney were still functioning. Survival of combined pancreas-kidney transplant recipients and transplanted organs in % (1988-2019, n=22 (patients) in n=18 (transplanted organs)) One-year survival Three-year survival Patients 100 % 100 % Transplanted organs Pancreas Kidney Pancreas Kidney 77,8 % 94,4 % 77,8 % 94,4 % Source: Associate Professor Dr. Damjan Kovac, DMS (Department of Nephrology, UMC Ljubljana) SURVIVAL / TRANSPLANTED ORGANS 77,8 94,4 77,8 94,4 LEGEND Kidney Pancreas One-year Three-year 100 95 90 85 80 75 70 65 60 % Patient survival after a lung transplant In the 1997-2019 period, 85 lung trans­ plants were performed on Slovenian pati­ents, one of whom had to undergo a re­-transplant. After relaunching the lung transplant programme in 2018, ten trans­plantations of both lung lobes were per­formed in the Ljubljana UMC in 2019. The first transplantation of one lung lobe was performed in the Ljubljana UMC in 2003. In 2019, a total of 11 lung transplantations was performed on Slovenian patients, with one of them being a paediatric transplan­tation that was performed in the University Hospital in Vienna. Survival of lung transplant recipients in % (1997-2019, n=85) One-year survival Three-year survival Five-year survival Patients 85 % 78,9 % 72,8 % Source: doc. dr. Matevž Harlander, MD (Department of Pulmology and Alergology, University Medical Centre Ljubljana) 90 85 80 75 70 65 60 % One-year Three-year Five-year SURVIVAL Patients LEGEND Tissues and cells TRANSPLANTATION OF HAEMATOPOIETIC STEM CELLS The transplantation of haematopoietic stem cells (HSCs) is the dominant type of cell treatment since over 70 malignant and non-malignant diseases can be treated in this way, whereas for specific haematological diseases this is the main and only therapeutic possibility a patient’s re­covery. The modern method of medical treatment using HSCs is more than 90% successful in optimal conditions (http://www.ztm.si). For such success, good donor-recipient immunological (HLA) matching is required. The HLAsystem differs in every person and it is very demanding to find a suitable match. In the international community, doctors decided to establish large registers of typified volunteer donors of HSCs to improve the possibility of HLAmatching and thus also the outcomes of transplants. All data are appropriately protected against unauthorised use. There are several types of donor-recipient matching. If it is possible to use a patient’s own HSCs, this is called an autologous donation. When this proves impossible, we look for another donor who may or may not be related to the recipient. Donation by another donor is called allogeneic and a donor is sought both in Slovenia and abroad. The Slovenija-donor register In Slovenia a register of non-related donors, Slovenia Donor, was established in 1991 and the following year it became a full member of the world register Bone Marrow Donors Worldwide (BMDW). On 31.12.2019, the Slovenia Donor register featured 20.597 people, of whom 19.475 were en­tered in the BMDW world register. HSC transplantations in Slovenia in the 2000-2019 period Transplantion type 2000-2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 AUTO 531 68 101 74 63 84 86 92 88 89 ALO-LRD 102 9 8 7 11 10 15 12 13 11 ALO-LUD 84 18 22 31 26 24 26 28 26 31 AUTO and ALO-LRD 21 TOTAL 738 95 131 112 100 118 127 132 127 131 AUTO – autologous transplantations, ALO – allogeneic transplantations, LRD – living related donor, LUD – living unrelated donor Source: Yearly report of ZTM – Slovenija donor, data collected monthly for Slovenija-transplant archives 700 600 500 400 300 200 100 0 140 120 100 80 60 40 20 0 CORNEA PROCUREMENT AND TRANSPLANTATION PROGRAMME Cornea transplantation is one of the most frequent and most successful tissue transplantations in the world. This medical treatment is often the only method that can improve sight after a disease or injury. In Slovenia, corneas are procured from deceased donors after a cardiac arrest or proven brain death. The removal of corneas is possible following consent given by the deceased person Procured and transplanted corneas in the 2010-2019 period Source: archive of Slovenija-transplant Year No. of procured corneas *No. of transplanted corneas 2010 122 72 2011 91 40 2012 101 67 2013 116 74 2014 116 87 2015 102 76 2016 104 83 2017 138 91 2018 84 66 2019 108 88 * 2010-2017 – cornea transplants performed in Ljubljana UMC only; from 2018 on, cornea transplants performed in Ljubljana UMC and Maribor UMC TOTAL 744 transplanted from 2010 to 2019 before their death or if their close relatives do not object. The final decision on the suitability of corneas for transplantation is always taken by the recipient’s responsible doctor. Corneas are transplanted in two transplantation centres: the Department of Ophthalmology in the Ljubljana UMC and the Department of Ophthalmology in the Maribor UMC. Waiting list of patients seeking a cornea transplant at the Department of Ophthalmology in the Ljubljana UMC (on 1 April 2020, as a percentage) Diagnosis Number of patients Keratoconus 56 Other diagnoses 212 TOTAL Vir: arhiv Slovenija-transplant 268 LEGEND Diagnosis of keratoconus: 56 patients (21 %) Other diagnoses: 212 patients (79 %) (injuries, degeneration, retransplantation, corneal macula, Fuchs dystrophy, endothelial dystrophy, cornea guttata, aphakia and pseudophakia, bullous keratopathy, infections, other) Source: archive of Slovenija-transplant OTHER TISSUES AND CELLS Traceability and transparency in transplant programmes or tissue and cell use programmes for treatment purposes Slovenija-transplant has established co-operation with all tissue and cell institutions, which must hold a valid permit from the Agency for Medicinal Products and Medical Devices of the Republic of Slovenia (hereinafter: JAZMP). We ensure traceability and transparency by promptly collecting and reviewing reports written by the institutions for tissues and cells which present the donation, procurement, processing, storing, allocation, use and disposal of tissues and cells. At the end of the year, Slovenija-transplant compiles an aggregate annual report based on annual reports issued by individual tissue and cell institutions. We also compile an annual final report on serious adverse events and reactions and submit it to the JAZMP, which then reports thereon to the European Commission. Tissue and cell institutions along with quality and safety assurance In Slovenia, 26 institutions are involved in the activity of procuring tissues and cells at the national level. Fifteen hospitals are included in the programme and, within these, 40 clinical departments. In terms of their status, 18 tissue and cell institutions are public and 8 privately owned. Private institutions hold a permit exclusively for the autologous procurement of tissues and cells. Slovenija-transplant and the JAZMP ensure that the system functions and promptly identify and discuss any deviations that could affect the quality and safety of the tissues and cells of donors, recipients as well as the staff involved in the processes. To obtain a permit, every institution must comply with strict expert and legal terms and provisions. All institutions have set up a quality assurance system where all the procedures for ensuring con­ ditions for tissue and cell quality and recipient safety are defined. They are regularly supervised by the JAZMP, whereas Slovenija-transplant also performs verification of the reported data. Artificial insemination with biomedical assistance and reproductive cells Four centres are registered in Slovenia for the activity of artificial insemination with biomedical assistance for couples incapable of conception to produce a child, namely the Ljubljana AIBA Centre, the Maribor AIBA Centre, the Postojna AIBA Centre and the Dravlje Health Centre. The scope of their activities is evident from the table showing the procured and used tissues and cells. This is the most comprehensive area in terms of the number of procedures conducted. In 2019, the Ministry of Health of the Republic of Slovenia formed an expert group, composed of the AIBA centres from Ljubljana, Maribor and Postojna, the Zdravje Private Health Institute and Slovenija-transplant. This group is drawing up expert guidelines and legislation for the establis­hment of a national AIBA register to which individual AIBA centres are to report their activities by certain deadlines. The register is to be managed by the National Institute of Public Health (NIJZ) on whose premises it will be physically installed. Slovenija-transplant will have access to the data for the purpose of ensuring the traceability, transparency as well as the quality and safety of tis­sues and cells. Procuring and storing umbilical cord blood and the umbilical cord In Slovenia we also procure haematopoietic stem cells from umbilical cord blood and the umbili­cal cord as well as other tissues (e.g. milk teeth). One public tissue bank, i.e. the Blood Transfusi­on Centre of Slovenia (hereinafter: BTCS), and three privately-owned institutions (Izvorna celica, Biobanka and FH-S) hold a permit for this activity. The public umbilical cord blood bank within the BTCS has stopped accepting samples of umbilical cord blood because a sufficient number of samples had been collected and stored to cater to the needs of Slovenia. Number of procured tissues and cells in the 2009-2019 period Year 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 Skin* 28 45 22 36 85 89 52 57 32 22 24 Bones* 38 123 108 67 93 82 147 74 80 78 71 Soft bone grafts* 22 39 / 3 11 3 9 / 12 / / Cartilage* 37 21 4 12 11 11 12 / / / / Reproductive cells (no. of cells) 15.854 43.472 8.640 27.479 41.929 37.542 39.769 26.191 36.338 13.778 26.813 *Unit: number of samples taken Number of tissues and cells used in the 2009-2019 period Year 2009 2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 Skin* 36 10 14 34 67 23 31 28 / 20 3 Bones* 23 47 57 97 59 62 92 82 72 71 81 Soft bone grafts* 12 / 2 2 3 4 3 5 2 3 5 Cartilage* 15 / 3 7 4 9 5 1 / / 1 Reproductive cells 1.450 2.018 29.651 23.330 23.506 27.271 31.127 26.620 31.817 12.110 5.109 *Unit: number of samples used Source: archive of Slovenija-transplant Number of procured umbilical cord blood units Institution / Year 2015 2016 2017 2018 2019 Izvorna celica 76 144 107 82 81 Biobanka 175 178 266 110 224 FH-S 8 45 101 169 192 Neocelica 238 0* 0* 0* 0* *this institution stopped operating Number of procured umbilical cord units Institution / Year 2015 2016 2017 2018 2019 Izvorna celica 60 116 96 52 73 Biobanka 32 150 222 96 212 FH-S 8 42 96 114 196 Neocelica 198 0* 0* 0* 0* *this institution stopped operating Source: archive of Slovenija-transplant ADVERSE EVENTS AND REACTIONS Slovenija-transplant is responsible for monitoring adverse events and reactions as well as deviati­ ons in the area of the procurement of tissues and cells for transplantation and/or tissue vigilance. The aim of collecting reports on adverse events and reactions or even raising doubts about them is to assure the quality of procedures and thus prevent the damage or even loss of tissues and cells. Reporting takes place using prescribed forms, whereby initial and final reports must be submitted for each case. Both forms are attached to the Rules on Tissue Vigilance. Reporting entails seve­ ral phases: identification of deviation, detailed description, adoption of appropriate measures for preventing damage to tissues and cells as well as people, reporting to relevant institutions and notification of all tissue and cell institutions which were provided with tissues and cells in which deviations were identified. All data collected in the tissue vigilance system are anonymised so as to ensure privacy and, on the other hand, comply with the so-called no-blame culture, which means encouraging reporting along with searching for solutions and improvements, while not judging and punishing implemen­ters on a personal level. In 2019, Slovenija-transplant received four reports on adverse events – all occurring in the tissue and cell procurement chain. Two cases were detected in an AIBA centre and two in bone procu­rement. We prepared an analysis and applied corrective measures. There were no serious con­sequences in any of the four cases and the risk of reoccurrence was assessed to be low. An AIBA centre also dealt with 18 cases of adverse reactions. Six cases involved ovarian hyper-stimulation syndrome and six patients were hospitalised. In 12 cases, strong venous bleeding occurred, but hospitalisation was not required. We found that, in order to improve overall awareness, it is necessary to organise additional tra­ining on tissue vigilance and adverse event reporting because it is possible that the reporting of 130 data on vigilance cases is slightly underrated. Number of adverse events and reactions in the 2009-2019 period 18 16 14 12 10 8 6 4 2 0 LEGEND Adverse reactions Adverse events PUBLICATIONS AND ORAL PRESENTATIONS Original and review scientific articles • Berzelak, N., Avsec, D., Kamin, T. (2019). Reluctance and willingness for organ donation after death among the Slovene general population. Slovenian journal of public health, 58(4): 155–163. Available at: https://content.sciendo.com/view/journals/sjph/58/4/article-p155.xml. • Lušicky, P., Avsec, D. (2019). The role of the Institute of the Republic of Slovenia for the transplantation of organs and tissues Slovenija-transplant in the donor programme. Sloveni­an Medical Journal, 88(1–2): 3–20. Available at: https://vestnik.szd.si/index.php/ZdravVest/article/view/2833. (in slo language) • Avsec, D. (2019). Organ and tissue donation and retrieval. In Kremžar, B., Voga, G., Gro­sek, Š. (eds.), Intensive care medicine - handbook. Ljubljana: Slovenian society for intensi­ ve care medicine. p. 991–997. (in slo language) Professional articles • Avsec, D. (2019). Legislative and ethical aspects of transplant medicine in Slovenia. In Buturovic-Ponikvar, J. (ed.), Ethical challenges in organ transplantation. Ljubljana: UMC Ljubljana, p. 45–53. • Gadžijev, A. (2019). New trends in transplant medicine. In Buturovic-Ponikvar, J. (ed.), Ethi­cal challenges in organ transplantation. Ljubljana: UMC Ljubljana, p. 71–74. • Uštar, B. (2019). Donor and transplantation activity in 2018. Transplant: Journal of Sloveni­ an patient association, June 2019: 4–8. (in slo language) • Uštar, B. (2019). Statistical data in 2019. Transplant: Journal of Slovenian patient associati­ on, December 2019: 4. (in slo language) • Šimenc, J., Avsec, D. (2019). First year of electronic registration for post-mortem organ donation. Transplant: Journal of Slovenian patient association, December 2019: 5-7. (in slo language) • Šimenc, J., Avsec, D. (2019). Give life a chance. Kidney: Journal of Slovenian kidney pati­ent association, December (3): 5–6. (in slo language) • Uštar, B. (avtor, ur.), Šimenc, J., Gadžijev, A., Cebulc, G., Jakovac, J., Avsec, D. (eds.). (2019). Give life a chance: Donor and transplantation activity in Slovenia in 2018. Ljubljana: Institute for transplantation of organs and tissues of the Republic of Slovenia. Available at: http://www.slovenija-transplant.si/uploads/media/TRANSPLANT_BROSURA__2018_SLO_ EN.pdf. • Organ and tissue donation. In Sotler, R. (ed.). Basics of first aid. Handbook for motor cyclers. Ljubljana: Red cross Slovenia, p. 198–199. (in slo language) Lectures and conferences (in chronological order) • Šimenc, J.: The role of (new) media in raising social awareness in organ and tissue donati­ on. Eudonorgan – Social awareness event, Budapest (Hungary), 14. 1. 2019. • Šimenc, J., Avsec, D.: Creating good reputation on Facebook: the case of Slovenia-tran­splant. 5th ELPAT congress Developing dialogue, pioneering practice, Krakow (Poland), 26.–29. 4. 2019. • Avsec, D.: Obstacles in transplant medicine in the ICU. 28. International symposium of intensive care medicine, Bled (Slovenia), 31. 5.–1. 6. 2019. • Gadžijev, A.: New trends in transplant medicine. 28. International symposium of intensive care medicine, Bled (Slovenia), 31. 5.–1. 6. 2019. • Šimenc, J.: Social media as a tool to inform publics on organ donation. 28. International symposium of intensive care medicine, Bled (Slovenia), 31. 5.–1. 6. 2019. • Avsec, D.: Legislative and ethical aspects of transplant medicine in Slovenia. Ethical chal­lenges in organ transplantation, UMC Ljubljana, Ljubljana (Slovenia), 7. 6. 2019. • Gadžijev, A.: New trends in transplantation medicine: donation after circulatory death. Ethi­cal challenges in organ transplantation, UMC Ljubljana, Ljubljana (Slovenia), 7. 6. 2019. • Uštar, B., Avsec, D.: Introducing E-registration in Slovene donor registry. 19th ESOT con­gress Inspiring minds, driving progress, Copenhagen (Denmark), 15.–19. 9. 2019. • Avsec, D. & Kušar, B.: Slovenija-transplant – case presentation. Microcop IT conference, Brdo pri Kranju (Slovenia), 15. 10. 2019. • Šimenc, J. & Avsec, D.: Medical anthropology in practice: the case of Slovenija-transplant (invited lecture). Health and society: Interdisciplinary research of health, disease and healing. Faculty of arts, University of Ljubljana, Ljubljana (Slovenia), 24. 10. 2019. • Avsec, D.: General aspects of organ donation and transplantation; Communication in the ICU and Declaration of Death; Public Education on Organ Donation 3rd International Train­ing Course in Transplant Coordination, Istanbul (Turkey), 25.–29. 11. 2019. • Šimenc, J.: Using digital media tools for donation professionals. 3rd International Training Course in Transplant Coordination, Istanbul (Turkey), 25.–29. 11. 2019. • Avsec, D.: Social significance of organ donation (invited lecture). China International Organ Donation Conference, Kunming (China), 7. 12. 2019. LITERATURE • Website of Slovenija-transplant: http://www.slovenija-transplant.si/. • Website of the Blood Transfusion Centre of Slovenia: http://www.ztm.si/register-darovalcev/slovenija-donor/. • Act Regulating the Obtaining and Transplantation of Human Body Parts for the Purposes of Medical Treatment (ZPPDCT), Official Gazette of the RS, no. 56/2015 • Council of Europe Convention against Trafficking in Human Organs (CM, 9.7.2014) • Website of Eurotransplant: http://www.eurotransplant.org/cms/. • Website of the European Directorate for the Quality of Medicines & HealthCare (EDQM): https://www.edqm.eu/. • Guide to the Quality and Safety of Organs for Transplantation. European Committee (Partial Agreement) on Organ Transplantation (CD-P-TO), European Directorate for the Quality of Medicines & Health Care, Strasbourg; 7th ed. 2018. • Guide to the Quality and Safety of Tissues and Cells for human application. European Committee (Partial Agreement) on Organ Transplantation (CD-P-TO), European Directorate for the Quality of Medicines & Health Care, Strasbourg; 4th ed. 2019. • The Madrid Resolution on Organ Donation and Transplantation: https://www.edqm.eu/sites/default/files/article_the_madrid_ resolution_on_organ_donation_and_transplantation_transplantation_journal_june_2011.pdf • Razvoj transplantacijske medicine v Sloveniji: programi, smernice in perspektive. Editors: Danica Avsec and Zvonka Zupanic Slavec; illustrations: Radko Oketic. Ljubljana: Institute for Transplantation of Organs and Tissues of the Republic of Slovenija Slovenija-transplant; Celje: Celjska Mohorjeva družba: Društvo Mohorjeva družba, 2016. • Donorski program: Postopki za izvajanje v donorskih bolnišnicah. Authors: Andrej Gadžijev, Danica Avsec. Ljubljana: Zavod RS za presaditve organov in tkiv Slovenija-transplant. Ljubljana, 2018. • Preliminary numbers 2019, IRODaT (International Registry in Organ Donation and Transplantation), www.irodat.org. • Website of EUDONORGAN project: http://eudonorgan.eu/. • Buturovic-Ponikvar, J (ed.), Zbornik predavanj strokovnega simpozija Eticni izzivi pri transplantaciji organov. Ljubljana: Univerzitetni klinicni center Ljubljana. 136 Zavod RS za presaditve organov in tkiv Slovenija-transplant Institute for Transplantation of Organs and Tissues of the Republic of Slovenia Zaloška 7, 1000 Ljubljana, Slovenija Spletna stran/web page: www.slovenija-transplant.si e-pošta/e-mail: info@slovenija-transplant.si Telefon: + 386 1 300 68 60 Faks: + 386 1 300 68 66 Direktorica/Director Prim. Danica Avsec, dr. med., svetnica GSM: + 386 41 760 917 E-pošta/e-mail: danica.avsec@slovenija-transplant.si