Clinical Kidney Journal, 2022, vol. 15, no. 3, 452–472 https:/doi.org/10.1093/ckj/sfab273 Advance Access Publication Date: 15 December 2021 Original Article O R I G I NA L A RT I C L E The ERA Registry Annual Report 2019: summary and age comparisons Rianne Boenink1 , Megan E. Astley1 , Jilske A. Huijben1 , Vianda S. Stel1 , Julia Kerschbaum2 , Mai Ots-Rosenberg3 , Anders A. Åsberg4,5 , Frantisek Lopot6 , Eliezer Golan7 , Pablo Castro de la Nuez8 , Marta Rodríguez Camblor9 , Sara Trujillo-Alemán10 , Juan Carlos Ruiz San Millan11 , Pablo Ucio Mingo12 , Juan Manuel Díaz13 , M. Encarnación Bouzas-Caamaño14 , Marta Artamendi15 , Manuel I. Aparicio Madre16 , Carmen Santiuste de Pablos17,18 , María Fernanda Slon Roblero19 , Oscar Zurriaga18,20,21 , Maria E. Stendahl22 , Samira Bell23,24 , Alma Idrizi25 , Kyriakos Ioannou26,27 , Alicja Debska-Slizien28 , Ana A. Galvão29 , Johan M. De Meester30 , Halima Resić31 , Kristine Hommel32 , Danilo Radunovic33 , Runolfur Pálsson34,35 , Mathilde Lassalle36 , Patrik Finne37,38 , María De los Ángeles-Garcia Bazaga39 , Nikola Gjorgjievski40,41 , Nurhan Seyahi 42 , Marjolein Bonthuis1,43 , Alberto Ortiz 44,45 , Kitty J. Jager1 and Anneke Kramer 1 1 ERA Registry, Department of Medical Informatics, Amsterdam UMC, University of Amsterdam, Amsterdam Public Health research institute, Amsterdam, The Netherlands, 2 Austrian Dialysis and Transplant Registry, Department of Internal Medicine IV—Nephrology and Hypertension, Medical University Innsbruck, Innsbruck, Austria, 3 Department of Internal Medicine of Tartu University and Tartu University Hospital, Tartu, Estonia, 4 The Norwegian Renal Registry, Oslo University Hospital—Rikshospitalet, Oslo, Norway, 5 Department of Transplantation Medicine, Oslo University Hospital—Rikshospitalet, Oslo, Norway, 6 Department of Medicine, General University Hospital, Prague—Strahov, Czech Republic, 7 Israel Renal Registry, Ramat Gan, Israel, 8 SICATA: Information System of the Autonomous Coordination of Transplants of Andalusia, Seville, Andalucia, Spain, 9 RERCA, Public Health Directorate, Asturias, Spain, 10 Health Quality Assessment and Information System Service, Dirección General de Programas Asistenciales, Servicio Canario de la Salud, Canary Islands, Spain, 11 Department of Nephrology, Valdecilla Hospital, IDIVAL, University of Cantabria, Santander, Cantabria, Spain, 12 Coordinación Autonómica de Trasplantes de Castilla y León, Dirección General de Planificación y Asistencia Sanitaria, Valladolid, Castilla y León, Spain, 13 Servei Nefrologia, Fundació Puigvert, Barcelona, Catalonia, Spain, 14 Regional Transplant Coordination of Galicia, Galician Health Service, Received: 17.11.2021; Editorial decision: 9.12.2021 © The Author(s) 2021. Published by Oxford University Press on behalf of the ERA. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com 452 ERA Registry Annual Report 2019 453 Santiago de Compostela, Galicia, Spain, 15 Nephrology Department, Hospital San Pedro, Logroño, La Rioja, Spain, 16 Oficina Regional de Coordinación de Trasplantes, Madrid Region, Spain, 17 Murcia Renal Registry, Department of Epidemiology, Murcia Regional Health Council, IMIB-Arrixaca, Murcia, Spain, 18 CIBERESP (Spanish Consortium for Biomedical Research in Epidemiology and Public Health), Madrid, Spain, 19 Complejo Hospitalario de Navarra, Pamplona, Navarra, Spain, 20 Valencian Region Renal Registry, Valencia Regional Health Authority, Generalitat Valenciana, Spain, 21 Universitat de Valencia, Valencia, Spain, 22 Swedish Renal Registry, Department of Internal Medicine, Jonkoping Regional Hospital, Jonkoping, Sweden, 23 Division of Population Health and Genomics, School of Medicine, University of Dundee, Dundee, UK, 24 The Scottish Renal Registry, Scottish Health Audits, Public Health Scotland, Meridian Court, Glasgow, UK, 25 Service of Nephrology, UHC Mother Teresa, Tirana, Albania, 26 Cyprus Renal Registry, Nicosia, Cyprus, 27 Nephrology Department, American Medical Center, Nicosia, Cyprus, 28 Department of Nephrology, Transplantology and Internal Medicine, Gdansk Medical University, Gdansk, Poland, 29 Portuguese Society of Nephrology, Coimbra, Portugal, 30 Department of Nephrology, Dialysis and Hypertension, Dutch-speaking Belgian Renal Registry (NBVN), Sint-Niklaas, Belgium, 31 Society of Nephrology and Dialysis of Bosnia and Herzegovina, Sarajevo, Bosnia and Herzegovina, 32 Department of Medicine, Holbaek Hospital, Holbaek, Denmark, 33 Clinical Center of Montenegro, Clinic for Nephrology, Podgorica, Montenegro, 34 Division of Nephrology, Landspitali–The National University Hospital of Iceland, Reykjavik, Iceland, 35 Faculty of Medicine, School of Health Sciences, University of Iceland, Reykjavik, Iceland, 36 REIN Registry, Agence de la Biomédecine, Saint-Denis La Plaine, France, 37 Department of Nephrology, University of Helsinki and Helsinki University Hospital, Helsinki, Finland, 38 Finnish Registry for Kidney Diseases, Helsinki, Finland, 39 Dirección General de Salud Pública, Servicio Extremeño de Salud, Consejería de Sanidad y Políticas Sociales, Junta de Extremadura, Spain, 40 University Hospital of Nephrology, Skopje, North Macedonia, 41 Faculty of Medicine, University SS “Cyril and Methodius”, Skopje, North Macedonia, 42 Department of Nephrology, Cerrahpaşa Medical Faculty, Istanbul University-Cerrahpaşa, Istanbul, Turkey, 43 ESPN/ERA Registry, Department of Medical Informatics, Amsterdam UMC, University of Amsterdam, Amsterdam Public Health Research Institute, Amsterdam, The Netherlands, 44 Department of Nephrology and Hypertension, IIS-Fundacion Jimenez Diaz UAM, Madrid, Spain and 45 Department of Medicine, Universidad Autonoma de Madrid, Madrid, Spain Correspondence to: Rianne Boenink; E-mail: r.boenink@amsterdamumc.nl ABSTRACT Background. Data on renal replacement therapy (RRT) for end-stage renal disease were collected by the European Renal Association (ERA) Registry via national and regional renal registries in Europe and countries bordering the Mediterranean Sea. This article provides a summary of the 2019 ERA Registry Annual Report, including data from 34 countries and additional age comparisons. Methods. Individual patient data for 2019 were provided by 35 registries and aggregated data by 17 registries. Using these data, the incidence and prevalence of RRT, the kidney transplantation activity and the survival probabilities were calculated. Results. In 2019, a general population of 680.8 million people was covered by the ERA Registry. Overall, the incidence of RRT was 132 per million population (p.m.p.). Of these patients, 62% were men, 54% were ≥65 years of age and 21% had diabetes mellitus as primary renal disease (PRD), and 84% had haemodialysis (HD), 11% had peritoneal dialysis (PD) and 5% had pre-emptive kidney transplantation as an initial treatment modality. The overall prevalence of RRT on 31 December 2019 was 893 p.m.p., with 58% of patients on HD, 5% on PD and 37% living with a kidney transplant. The overall kidney transplant rate was 35 p.m.p. and 29% of the kidney grafts were from a living donor. The unadjusted 5-year survival probability was 42.3% for patients commencing dialysis, 86.6% for recipients of deceased donor grafts and 454 R. Boenink et al. 94.4% for recipients of living donor grafts in the period 2010–14. When comparing age categories, there were substantial differences in the distribution of PRD, treatment modality and kidney donor type, and in the survival probabilities. Keywords: dialysis, epidemiology, ESRD, graft survival, kidney transplantation, patient survival INTRODUCTION plant (Figure 4). The distribution of initial treatment modalities was similar for men and women (Figure 4). Patients with DM as This article provides a summary of the European Renal Associa- PRD more often started RRT on HD compared with those without tion (ERA) Registry’s 2019 Annual Report (Supplementary data), DM (86% versus 80%) and less frequently received a pre-emptive which presents the latest data on the epidemiology of renal re- kidney transplant (2% versus 6%). On Day 91 after the start placement therapy (RRT) for end-stage renal disease (ESRD) in of RRT, 82% of incident patients were receiving HD, 13% were Europe and countries bordering the Mediterranean Sea. Data receiving PD and 5% were living with a functioning kidney trans- were provided to the ERA Registry by a total of 52 national or plant (Figure 5). regional registries from 34 countries; 35 registries provided indi- vidual patient data and 17 renal registries provided aggregated data (Appendix 1). Compared with the 2018 Annual Report, this Prevalence of RRT year data from Poland could be included, while data from Bul- On 31 December 2019, 607 320 patients were receiving RRT for garia could not be included. In addition, this year for the first ESRD, corresponding to around 1 per every 1000 Europeans (893 time, individual patient data from the Spanish region La Ri- p.m.p.; Table 2). Within individual countries or regions, the un- oja were included. The coverage of the general population was adjusted prevalence ranged from 1 per 4000 inhabitants (244 680.3 million people for the incidence calculations and 680.8 p.m.p.) in Ukraine and 1 per 2500 inhabitants (376 p.m.p.) in Mon- million people for the prevalence calculations, the discrepancy tenegro to 1 per 650 inhabitants (1582 p.m.p.) in the Valencian resulting from a difference in coverage of the general popula- region (Spain) and 1 per 500 inhabitants (2008 p.m.p.) in Portugal tion in the Netherlands. When excluding Israel, the remaining (Table 2 and Figures 6 and 7). The adjusted prevalence rate was countries cover a general population of 672 million people, rep- available for 25 countries and ranged from 1 per 2500 inhabitants resenting 78.0% of the 2019 European general population. This (393 p.m.p.) in Montenegro to 1 per 650 inhabitants (1566 p.m.p.) coverage is higher than the 74.2% covered in the 2018 Annual in Murcia (Spain; Figure 7). The prevalence of patients with DM Report [1]. as PRD was 154 p.m.p. and ranged from 38 p.m.p. in Ukraine The 2019 incidence and prevalence of RRT, kidney transplan- to 425 p.m.p. in Canary Islands (Spain). Prevalent patients re- tation activity and both patient and graft survival in Europe are ceiving RRT had a median age of 60.5 years, which ranged from presented in this article. In addition, this year’s annual report 53.0 years in Albania to 69.0 years in Israel (Table 2). Among the contains additional age comparisons that are also presented in prevalent patients, 61% were men, 45% were aged ≥65 years and this article. Further details on the methodology used for anal- 15% had DM as PRD (Figure 8). Furthermore, 58% of the preva- ysis, as well as the complete results, can be found in the ERA lent patients were receiving HD, while 5% were receiving PD and Registry 2019 Annual Report (Supplementary data). a further 37% were living with a kidney transplant (Figure 9). Patients with DM as PRD were less likely to be living with a func- RESULTS tioning kidney transplant compared with patients with a PRD other than DM (29% versus 51%). Incidence of RRT In 2019, 89 579 individuals out of a population of 680.3 mil- Kidney transplantation lion people initiated RRT for ESRD, corresponding to around 1 per every 7500 Europeans [132 per million population (p.m.p.); A total of 24 013 kidney transplantations were carried out in Table 1]. The unadjusted incidence ranged from around 1 per 2019, resulting in an overall unadjusted transplant rate of 25 000 inhabitants (40 p.m.p.) in Ukraine and 1 per 13 500 in- around 1 per 28 500 Europeans (35 p.m.p.; Figure 10). In the habitants (74 p.m.p.) in Estonia to around 1 per 3500 inhabitants individual countries or regions, the unadjusted kidney trans- (269 p.m.p. and 284 p.m.p.) in Greece and Cyprus (Table 1 and plant rates ranged from 1 per 350 000 inhabitants (3 p.m.p.) in Figures 1 and 2). The adjusted incidence rate [standardized to Serbia and Ukraine to 1 per 10 000 inhabitants (98 p.m.p.) in the age and sex distribution of the European Union 28 (EU-28) Navarre (Spain) and 1 per 8500 inhabitants (115 p.m.p.) in Catalo- countries’ population in 2015] [2] was available for 27 countries nia (Spain). Altogether, the unadjusted deceased donor kidney and ranged between 1 per 13 500 inhabitants (75 p.m.p.) in Es- transplant rate was more than twice that of living donor trans- tonia and 1 per 3500 inhabitants (300 p.m.p.) in Israel (Figure 2). plants (69% versus 29%; 24 p.m.p. versus 10 p.m.p.; Figures 11 For patients with diabetes mellitus (DM) as primary renal dis- and 12). The highest unadjusted rates of deceased donor kidney ease (PRD), the unadjusted incidence of RRT was 28 p.m.p, rang- transplants were found in some Spanish regions [more than 1 ing from 8 and 10 p.m.p. in Iceland and Ukraine, respectively, to per 12 500 inhabitants (>80 p.m.p.); Figure 12], while the highest 92 and 120 p.m.p. in Israel and Cyprus, respectively (Table 1). The unadjusted rates of living donor transplants were observed in median age of patients starting RRT was 67.9 years, but this dif- Northern Ireland [1 per 29 500 inhabitants (34 p.m.p.)] and Turkey fered by 20 years between Ukraine (54.0 years) and Greece (74.4 [1 per 27 000 inhabitants (37 p.m.p.); Figure 12]. years; Table 1). Of the total group of patients commencing RRT, 62% were men, 54% were aged ≥65 years and 21% had DM as PRD Survival of patients receiving RRT (Figure 3). When initiating RRT, the majority (84%) of patients started on haemodialysis (HD), 11% started on peritoneal dialy- During the period 2010–14, the 5-year unadjusted patient sur- sis (PD) and 5% of patients received a pre-emptive kidney trans- vival probability for patients commencing RRT was 51.9% [95% ERA Registry Annual Report 2019 455 Table 1. Incidence of RRT (as count and p.m.p.) in 2019 on Day 1, by country or region, unadjusted and the mean and median age at the start of RRT and the incidence of RRT for patients with DM as primary renal disease (as count and p.m.p.) Incidence of RRT in 2019, at Day 1 General population covered by the registry All Mean age Median age DM Country/region in thousands All (n) (p.m.p.) (years) (years) DM (n) (p.m.p.) Albania 2833 356 126 60.0 62.5 73 26 Austriaa 8859 1200 135 65.5 68.9 284 32 Belarusb 9466 883 93 187 20 Belgium, Dutch-speakingc 6618 1254 189 70.6 73.5 234 35 Belgium, French-speakingc 4871 997 205 67.3 69.4 227 47 Bosnia and Herzegovina 3531 391 111 63.5 64.9 114 32 Cyprus 888 252 284 69.0 73.0 107 120 Czech Republicd 10 480 2267 216 Denmark 5871 634 108 62.0 66.1 168 29 Estonia 1327 98 74 59.2 62.8 21 16 Finland 5522 530 96 62.2 66.0 158 29 France 67 249 11 417 170 67.8 70.6 2674 40 Greece 10 722 2883 269 71.7 74.4 749 70 Iceland 361 39 108 63.1 66.3 3 8 Israel 9053 1790 198 66.1 69.4 836 92 Italy (8 of 20 regions) 22 431 3703 165 69.5 72.3 568 25 Kosovo 1688 192 114 59.5 61.5 71 42 Latvia 1297 121 93 62.1 65.0 32 25 Lithuania 2794 315 113 65.1 64.0 62 22 Montenegroc 622 70 113 61.3 64.7 17 27 North Macedonia 2076 380 183 64.9 66.0 94 45 Norway 5348 606 113 63.7 68.0 113 21 Poland 38 383 5865 153 1840 48 Portugale 10 277 2673 260 872 85 Romania 19 100 3643 191 62.9 65.0 432 23 Russiad 143 814 12 602 88 2837 20 Serbia 6251 511 82 61.8 64.8 130 21 Slovakiad 4644 566 122 64.2 66.0 174 37 Spain (All) 47 026 7133 152 63.4 67.9 1740 37 Spain, Andalusia 8453 1272 150 63.9 66.9 344 41 Spain, Aragon 1325 177 134 65.2 68.9 49 37 Spain, Asturias 1021 173 170 68.0 69.0 44 43 Spain, Basque country 2184 277 127 64.6 68.4 66 30 Spain, Canary Islands 2222 392 176 64.7 67.0 128 58 Spain, Cantabriac 582 75 129 66.1 67.9 20 34 Spain, Castile and Leónc 2400 319 133 68.1 69.9 85 35 Spain, Castile-La Manchac 2040 237 116 66.4 69.4 73 36 Spain, Catalonia 7675 1403 183 65.9 69.5 236 31 Spain, Community of Madrid 6663 823 124 64.4 67.4 215 32 Spain, Extremadura 1068 154 144 65.2 67.0 37 35 Spain, Galicia 2702 464 172 65.7 67.8 125 46 Spain, La Rioja 315 28 89 66.7 72.1 9 29 Spain, Murcia 1494 244 163 65.5 68.9 61 41 Spain, Navarrec 653 102 156 68.4 71.5 24 37 Spain, Valencian region 5004 849 170 66.2 69.0 194 39 Sweden 10 279 1164 113 64.0 68.1 271 26 Switzerland 8575 848 99 66.1 69.3 171 20 The Netherlands 16 131 1939 120 63.7 67.2 363 23 Turkeyf 83 155 12 518 151 560 56 UK, England 56 287 6889 122 61.1 64.1 1815 32 UK, Northern Ireland 1894 207 109 61.0 63.0 42 22 UK, Scotland 5463 566 104 58.3 60.8 166 30 UK, Wales 3153 402 128 62.0 65.4 144 46 Ukraineb 41 984 1675 40 52.9 54.0 399 10 All countries 680 322 89 579 132 64.9 67.9 18 748 28 When cells are left empty, the data are unavailable and could not be used for the calculation of the summary data. a The incidence is underestimated by approximately 1% due to one haemodialysis centre not submitting data. b Patients younger than 18 years of age are not reported. c Patients younger than 20 years of age are not reported: the true incidence counts are therefore slightly higher than the counts reported here. d Data include dialysis patients only. e Data on the incidence of primary renal disease are available for dialysis patients only (98.8%, total n = 2673). f Data on the incidence of primary renal disease (DM) is based on 1498 dialysis patients (12.0% of total). RRT, renal replacement therapy; DM, diabetes mellitus as primary renal disease. 456 R. Boenink et al. FIGURE 1: Incidence of RRT (p.m.p.) in 2019, on Day 1, by country or region, unadjusted. The incidence for Czech Republic, Russia and Slovakia only includes patients receiving dialysis. confidence interval (95% CI) 51.6–52.1 Table 3]. Patients start- ing PD were identified through an adjusted analysis focusing ing RRT on dialysis in this period had an observed unadjusted on HD and PD (Figure 13). Among patients receiving a kidney 5-year patient survival probability of 42.3% (95% CI 42.1–42.6). transplant in the period 2010–14, living donor transplant recipi- Higher survival probabilities in the first 2 years for those receiv- ents experienced a higher adjusted 5-year patient survival than ERA Registry Annual Report 2019 457 FIGURE 2: Unadjusted (left panel) and adjusted (right panel) incidence of RRT p.m.p. in 2019, on Day 1, by country or region. Registries providing individual patient data are shown as dark-coloured bars and registries providing aggregated data as light-coloured bars. Age- and sex-adjusted incidence was calculated by standardization to the age and sex distribution of the EU-28 population. The incidence for Czech Republic, Russia and Slovakia only includes patients receiving dialysis. recipients of deceased donor transplants, 95.1% (95% CI 94.7– 87.9% (95% CI 87.3–88.5) versus 81.6% (95% CI 81.2–82.0; 95.6) versus 92.3% (95% CI 92.0–92.6; Figure 13 and Table 3). Liv- Table 3). A description of the adjustments made and the coun- ing donor transplant recipients also had a higher adjusted 5- tries and regions included in these analyses can be found in year graft survival compared with deceased donor transplants, Table 3. 458 R. Boenink et al. FIGURE 3: (A) Sex, (B) age and (C) primary renal disease distribution by type of FIGURE 4: Treatment modality distribution, on Day 1, by (A) type of data pro- data provided for incident patients accepted for RRT in 2019, on Day 1. See Ap- vided, (B) sex and (C) primary renal disease (DM and non-DM) for incident pa- pendix 1 for a list of countries and regions providing individual patient data or tients accepted for RRT in 2019. Panels (B) and (C) are only based on the data from aggregated data. registries providing individual patient data. See Appendix 1 for a list of countries and regions providing individual patient data or aggregated data. DM, diabetes mellitus; HD, haemodialysis; PD, peritoneal dialysis; Tx, kidney transplant. ERA Registry Annual Report 2019 459 Expected remaining lifetime Based on data from the period 2015 to 2019, patients receiving dialysis are expected to live only around half of the estimated remaining lifetime of patients living with a functioning kidney transplant (Figure 14). The life expectancy of patients on dialysis was about 70% shorter than that in the general population. For kidney transplant recipients, life expectancy was approximately 40% shorter than that of the general population. Age comparisons Figures 15–21 show the comparisons of age groups using data from 35 national or regional renal registries in 18 countries pro- viding individual patient data. In 2019, the incidence of RRT ranged from around 1 per 170 000 persons aged 0–19 years [6 per million age-related population (p.m.a.r.p.)] to around 1 per 1900 persons aged ≥75 years (539 p.m.a.r.p.; Figure 15). The pro- portion of women was higher in patients aged 0–19 years (43%) than in older age groups (34–38%). In addition, there were consid- erable differences in the PRD distribution (Figure 16). Especially in the youngest age category, a high proportion of patients with ESRD due to miscellaneous causes was observed, likely resulting from hereditary and congenital diseases being included in this PRD category (Appendix 2). On the other hand, the proportion of patients with DM or hypertension as PRD increased with age. In addition, the distribution of initial treatment modalities differed between age groups, with decreasing proportions of patients re- ceiving either PD or a pre-emptive transplant with advancing age (Figure 16). On 31 December 2019, the unadjusted prevalence of RRT ranged from around 1 per 19 000 persons aged 0–19 years (53 p.m.a.r.p.) to 1 per 300 persons aged ≥75 years (3154 p.m.a.r.p.; Figure 17). The distribution of men and women was similar among all age groups, with approximately 38% being women (Figure 18). A total of 60% of RRT patients aged 0–19 years had miscellaneous PRD (Figure 18). The distribution of treat- ment modalities differed largely between age groups, with 78% of patients aged 0–19 years living with a functioning kidney graft compared with 18% of patients aged ≥75 years (Figure 18). Figure 19 shows the number of kidney transplants in each recipient age group. The group of recipients aged 45–64 years received the highest number of kidney transplants, represent- ing 47% of the total number of kidneys transplanted in 2019. In total, 77% of kidney transplantations were performed us- ing deceased donor grafts. However, this proportion differed be- tween the age groups, ranging from 63% deceased donor grafts in patients aged 0–19 years to 93% in patients aged ≥75 years (Figure 20). Figure 21 shows the adjusted patient survival probabilities by age category for patients on dialysis or recipients of a first kidney transplantation. In dialysis patients, the 5-year patient survival ranged from 90% in patients aged 0–19 years to 25% in patients aged ≥75 years. For kidney transplant recipients, the 5-year pa- tient survival after first kidney transplantation ranged from 97% in patients aged 0–19 years to 66% in patients aged ≥75 years. FIGURE 5: Treatment modality distribution, on Day 91, by (A) type of data pro- vided, (B) sex and (C) primary renal disease (DM and non-DM) for incident pa- tients accepted for RRT in 2019. Parts (B) and (C) are only based on the data from AFFILIATED REGISTRIES registries providing individual patient data. See Appendix 1 for a list of countries and regions providing individual patient data or aggregated data. DM, diabetes Albanian Renal Registry (A. Idrizi, M. Rroji and E. Likaj); Austrian mellitus; HD, haemodialysis; PD, peritoneal dialysis; Tx, kidney transplant. Dialysis and Transplant Registry (OEDTR) (F. Engler, R. Kramar, 460 R. Boenink et al. Table 2. Prevalence of RRT (as count and p.m.p.) on 31 December 2019, by country or region, unadjusted and the mean and median age on 31 December 2019 and the prevalence of RRT for patients DM as primary renal disease (as count and p.m.p.) Prevalent patients on RRT in 2019 General population covered by the registry All Mean age Median age DM Country/region in thousands All (n) (p.m.p.) (years) (years) DM (n) (p.m.p.) Albania 2833 1706 602 51.9 53.0 352 124 Austriaa 8859 9250 1044 62.4 63.7 1407 159 Belarusb 9466 3948 417 515 54 Belgium, Dutch-speakingc 6618 8648 1307 66.6 68.5 1431 216 Belgium, French-speakingc 4871 6658 1367 65.3 67.0 1194 245 Bosnia and Herzegovina 3531 2695 763 60.2 62.0 543 154 Cyprus 888 Czech Republic 10 480 11 543 1101 Denmark 5871 5591 952 59.1 60.5 943 161 Estonia 1327 1040 784 58.8 59.5 195 147 Finland 5522 5198 941 59.9 62.4 1300 235 France 67 249 92 512 1376 63.4 65.5 15 299 227 Greece 10 722 15 153 1413 65.8 68.0 2903 271 Iceland 361 292 810 57.4 58.8 32 89 Israeld 9053 6839 755 67.0 69.0 3239 358 Italy (8 of 20 regions) 22 431 28 622 1276 63.3 65.4 2992 133 Kosovo 1688 792 469 60.1 61.0 248 147 Latvia 1297 1040 802 56.1 58.0 119 92 Lithuania 2794 2424 868 Montenegroc 622 234 376 58.5 60.5 41 66 North Macedonia 2076 1853 893 59.8 61.0 329 158 Norway 5348 5369 1004 60.2 62.5 746 139 Polandd 38 383 21 339 556 6211 162 Portugale,f 10 277 20 640 2008 67.5 3694 359 Romania 19 100 22 236 1164 63.2 65.0 2222 116 Russia 143 814 59 106 411 10 752 75 Serbia 6251 5495 879 60.5 62.9 956 153 Slovakiad 4644 3161 681 64.7 67.0 904 195 Spain (All) 47 026 64 311 1368 60.7 64.0 10 566 225 Spain, Andalusia 8453 10 943 1295 61.2 62.5 1793 212 Spain, Aragon 1325 1800 1358 64.4 66.1 322 243 Spain, Asturias 1021 1438 1409 64.4 65.6 255 250 Spain, Basque country 2184 2767 1267 62.2 64.4 342 157 Spain, Canary Islands 2222 3409 1534 62.5 63.6 944 425 Spain, Cantabriac 582 668 1148 63.3 64.8 102 175 Spain, Castile and Leónc 2400 3149 1312 65.5 66.5 552 230 Spain, Castile-La Manchac 2040 2526 1238 63.6 64.5 424 208 Spain, Catalonia 7675 11 551 1505 63.4 65.1 1630 212 Spain, Community of Madrid 6663 8017 1203 62.5 63.9 1439 216 Spain, Extremadura 1068 1358 1272 62.7 63.2 213 199 Spain, Galicia 2702 3994 1478 63.5 64.9 699 259 Spain, La Rioja 315 393 1249 62.4 64.7 47 149 Spain, Murcia 1494 2128 1424 62.6 63.7 320 214 Spain, Navarre c 653 896 1372 63.8 65.7 138 211 Spain, Valencian region 5004 7914 1582 63.8 65.8 1160 232 Sweden 10 279 10 240 996 60.3 62.4 1786 174 Switzerland 8575 8298 968 62.8 64.7 1259 147 The Netherlands 16 651 17 886 1074 61.1 63.1 2386 143 Turkeyg 83 155 83 783 1008 2381 371 UK, England 56 287 58 406 1043 58.2 59.3 10 242 183 UK, Northern Ireland 1894 1966 1045 58.2 59.0 282 150 UK, Scotland 5463 5435 995 57.2 58.5 942 172 UK, Wales 3153 3361 1071 58.9 60.5 607 193 Ukraineb 41 984 10 250 244 53.4 55.0 1614 38 All countries 680 842 607 320 893 61.8 60.5 90 633 154 When cells are left empty, the data are unavailable and could not be used for the calculation of the summary data. a The prevalence is underestimated by approximately 1% due to one haemodialysis centre not submitting data. b Patients younger than 18 years of age are not reported. c Patients younger than 20 years of age are not reported. The true prevalent counts are therefore slightly higher than the counts reported here. d Data on prevalence include dialysis patients only. e Data on mean age include dialysis patients only. f Data on primary renal disease are available for dialysis patients only (64.8%, total n = 20 640). g Data on the prevalence of primary renal disease (DM) is based on 6460 dialysis patients (7.6% of total). RRT, renal replacement therapy; DM, diabetes mellitus as primary renal disease. ERA Registry Annual Report 2019 461 FIGURE 6: Prevalence of RRT (p.m.p.) on 31 December 2019 by country or region. The prevalence for Israel, Poland and Slovakia only includes patients receiving dialysis. 462 R. Boenink et al. FIGURE 7: Unadjusted (left panel) and adjusted (right panel) prevalence (p.m.p.) of RRT on 31 December 2019 by country or region. Registries providing individual patient data are shown as dark-coloured bars and registries providing aggregated data as light-coloured bars. Age- and sex-adjusted prevalence was calculated by standardization to the age and sex distribution of the EU-28 population. The prevalence for Israel, Poland and Slovakia only includes patients receiving dialysis. ERA Registry Annual Report 2019 463 FIGURE 8: (A) Sex, (B) age and (C) primary renal disease distribution, by type of FIGURE 9: Treatment modality distribution by (A) type of data provided, (B) sex data provided for prevalent patients on RRT on 31 December 2019. See Appendix and (C) primary renal disease (DM and non-DM) for prevalent patients on RRT on 1 for a list of countries and regions providing individual patient data or aggre- 31 December 2019. Parts (B) and (C) are only based on the data from registries pro- gated data. viding individual patient data. See Appendix 1 for a list of countries and regions providing individual patient data or aggregated data. DM, diabetes mellitus; HD, haemodialysis; PD, peritoneal dialysis; Tx, kidney transplant. 464 R. Boenink et al. FIGURE 10: Kidney transplants performed in 2019, presented as counts and p.m.p., by country or region, unadjusted. Registries providing individual patient data are shown as red-coloured bars and registries providing aggregated data as orange-coloured bars. The total count for Austria is based on residents and non-residents. For Romania, Serbia and the Netherlands, the overall kidney transplant rate is underestimated by 30%, 15% and 2%, respectively. ERA Registry Annual Report 2019 465 Registry (O. Stojceva and R.I. Bushljetik); Norwegian Renal Reg- istry (A.V. Reisæter); Portuguese Renal Registry (A. Ferreira); Ro- manian Renal Registry (RRR) (G. Mircescu, L. Garneata and E. Podgoreanu); Russian Renal Registry (A. Andrusev, H. Zakharova and N. Tomilina); Renal Registry in Serbia (M. Lausevic, R. Nau- movic, all of the Serbian renal units and the Serbian Society of Nephrology); Slovakian Renal Registry (I. Lajdová, V. Spus- tová and M.J. Rosenberger); Spain Renal Registry (B. Mahillo Durán and M.O. Valentín Muñoz); Swedish Renal Registry (SRR) (K.G. Prütz, M. Evans, S. Schön, T. Lundgren, H. Rydell and M. Segelmark); Swiss Dialysis Registry (P. Ambühl and R. Guidotti); Dutch Renal Registry (RENINE) (L. Heuveling, S. Vogelaar and M. ten Dam); Registry of the Nephrology, Dialysis and Transplanta- tion in Turkey (TSNNR) (K. Ateş and G. Süleymanlar); Ukrainian Renal Data System (URDS) (M. Kolesnyk, O. Razvazhaieva and N. Kozliuk); UK Renal Registry (all the staff of the UK Renal Registry and of the renal units submitting data); Scottish Renal Registry (SRR) (all of the Scottish renal units); and the regional registries of Andalusia (SICATA), Aragon (F. Arribas Monzón), Asturias (P. FIGURE 11: Donor-type distribution for kidney transplants performed in 2019, by Beltrán, J.R. Quirós and RERCA Working Group), Basque coun- type of data provided. See Appendix 1 for a list of countries and regions providing try (UNIPAR) (Á. Magaz, J. Aranzabal, M. Rodrigo and I. Moina), individual patient data or aggregated data. Canary Islands (I. Santana Gil and C. Torres Medina), Cantabria, Castile and León (M.A. Palencia García), Castile-La Mancha (G. Gutiérrez Ávila and I. Moreno Alía), Catalonia (RMRC) (J. Co- G. Mayer and the Austrian Society of Nephrology); Belarus Re- mas and J. Tort), Community of Madrid (F. Tornero Molina), Ex- nal Registry (K.S. Komissarov and K.S. Kamisarau); Dutch speak- tremadura [all the renal units (Nephrology and Dialysis)], Gali- ing Belgian Society of Nephrology (NBVN) (M. Couttenye and cia, La Rioja (E. Huarte Loza and H. Hernández Vargas), Murcia F. Schroven); French speaking Belgian Society of Nephrology (I. Marín Sánchez), Navarre (J. Manrique Escola and J. Arteaga (GNFB) (J.M. des Grottes and F. Collart); Renal Registry Bosnia and Coloma) and Valencian region (O.L. Rodríguez-Arévalo). Herzegovina; Cyprus Renal Registry (A. Pastelli and L. Yioukas); Czech Republic: Registry of Dialysis Patients (RDP) (I. Rychlík and J. Potucek); Danish Nephrology Registry (DNS); Estonian So- ERA REGISTRY COMMITTEE MEMBERS ciety of Nephrology (Ü. Pechter and K. Lilienthal); Finnish Reg- C. Wanner, Germany (ERA President); A. Ortiz, Spain (Chairman); istry for Kidney Diseases (J. Helve and H. Niemelä); France: The P. Ambühl, Switzerland; M. Arici, Turkey; M. Arnol, Slovenia; P.M. Epidemiology and Information Network in Nephrology (REIN) Ferraro, Italy; J. Harambat, France; J. Helve, Finland; J.E. Sánchez- (C. Couchoud); Hellenic Renal Registry (G. Moustakas); Icelandic Alvarez, Spain; M. Segelmark, Sweden; S.S. Sørensen, Denmark End-Stage Renal Disease Registry; Montenegro Renal Registry and E. Vidal, Italy. (M. Ratkovic and F. Tomović); Israel National Registry of Renal Replacement Therapy (L. Keinan-Boker and R. Dichtiar); Ital- ian Registry of Dialysis and Transplantation (RIDT) (A. Limido, M. Nordio and M. Postorino); Kosovo Renal Registry (S. Selmani ERA REGISTRY OFFICE STAFF and M. Tolaj-Avdiu); Latvian Renal Registry (V. Kuzema, A. Popo- K.J. Jager (Managing Director), M.E. Astely, M. Bonthuis, R. vam and A. Pētersons); Lithuanian Renal Registry (V. Vainauskas, Bonenink, R. Cornet, G. Guggenheim, J.A. Huijben, A. Kramer, I. Nedzelskiene and E. Žiginskiené); North Macedonian Renal V.S. Stel and A.J. Weerstra. 466 R. Boenink et al. FIGURE 12: Deceased donor (left panel) and living donor (right panel) kidney transplants performed in 2019 p.m.p., by country or region, unadjusted. Registries providing individual patient data are shown as dark-coloured bars and registries providing aggregated data as light-coloured bars. The total count for Austria is based on residents and non-residents. For Romania and the Netherlands, the kidney transplant rate is underestimated by 30% and 2%, respectively. For Serbia, the transplant rate is underestimated by 16% for deceased donor transplants and by 12% for living donor transplants. ERA Registry Annual Report 2019 467 Table 3. Survival probabilities at 1, 2 and 5 years by treatment modality and cohort, from Day 1 of the start of RRT or dialysis, or from the day of first kidney transplantation Survival probabilities as percentage (95% CIs) Cohort 2010–14 Cohort 2013–17 Survival type 1 year 2 years 5 years 1 year 2 years Patient survival on RRT Unadjusted 84.5 (84.4–84.7) 74.5 (74.3–74.8) 51.9 (51.6–52.1) 85.6 (85.4–85.7) 76.0 (75.8–76.2) Adjusteda 87.3 (87.2–87.5) 78.2 (78.0–78.4) 54.1 (53.8–54.3) 88.1 (87.9–88.2) 79.3 (79.1–79.5) Patient survival on dialysis Unadjusted 83.5 (83.3–83.6) 72.0 (71.8–72.2) 42.3 (42.1–42.6) 84.5 (84.3–84.7) 73.4 (73.2–73.6) Adjusteda 85.7 (85.6–85.9) 75.5 (75.2–75.7) 47.4 (47.1–47.7) 86.9 (86.7–87.1) 77.1 (76.9–77.3) Patient survival after first kidney transplantation (deceased donor) Unadjusted 96.2 (96.0–96.4) 94.0 (93.8–94.3) 86.6 (86.3–87.0) 96.3 (96.1–96.5) 94.2 (94.0–94.5) Adjustedb 98.0 (97.8–98.1) 96.7 (96.6–96.9) 92.3 (92.0–92.6) 98.0 (97.9–98.2) 96.9 (96.7–97.1) Graft survival after first kidney transplantation (deceased donor) Unadjusted 90.7 (90.4–91.0) 87.6 (87.3–88.0) 77.7 (77.3–78.1) 91.3 (91.0–91.6) 88.3 (88.0–88.6) Adjustedb 92.6 (92.3–92.9) 90.0 (89.7–90.4) 81.6 (81.2–82.0) 93.2 (92.9–93.4) 90.7 (90.4–91.0) Patient survival after first kidney transplantation (living donor) Unadjusted 99.1 (98.9–99.2) 98.1 (97.9–98.4) 94.4 (93.9–94.8) 98.9 (98.7–99.0) 98.1 (97.8–98.3) Adjustedb 99.2 (99.1–99.4) 98.4 (98.2–98.7) 95.1 (94.7–95.6) 99.1 (98.9–99.2) 98.4 (98.2–98.7) Graft survival after first kidney transplantation (living donor) Unadjusted 96.8 (96.4–97.1) 95.1 (94.6–95.4) 88.6 (88.0–89.1) 96.7 (96.4–97.0) 95.3 (94.9–95.7) Adjustedb 96.6 (96.2–96.9) 94.8 (94.3–95.2) 87.9 (87.3–88.5) 96.5 (96.2–96.8) 95.0 (94.6–95.4) The findings are based on data from the following renal registries providing individual patient data: Austria, Belgium (Dutch-speaking), Belgium (French-speaking), Bosnia and Herzegovina, Denmark, Finland, France, Greece, Iceland, Norway, Spain (Andalusia), Spain (Aragon), Spain (Asturias), Spain (Basque country), Spain (Cantabria), Spain (Castile and León), Spain (Castile-La Mancha), Spain (Catalonia), Spain (Community of Madrid), Spain (Extremadura), Spain (Galicia), Spain (Murcia), Spain (Valencian Region), Sweden, the Netherlands, the UK (England/Northern Ireland/Wales) and the UK (Scotland). Unadjusted survival probabilities were calculated using the Kaplan–Meier method, and adjusted survival probabilities using the Cox regression model. a Analyses were adjusted using fixed values: age (67 years), sex (63% men) and primary renal disease (24% diabetes mellitus, 19% hypertension/renal vascular disease, 11% glomerulonephritis and 46% other causes). b Analyses were adjusted using fixed values: age (50 years), sex (63% men) and primary renal disease (14% diabetes mellitus, 10% hypertension/renal vascular disease, 23% glomerulonephritis and 53% other causes). FIGURE 13: Survival of patients starting HD and PD between 2010 and 2014 from Day 91 (left panel) and patients receiving a first kidney transplant from a living or deceased donor between 2010 and 2014 (right panel). Survival on dialysis was censored for kidney transplantation and adjusted using fixed values for age (67 years), sex (63% men) and primary renal disease (24% diabetes mellitus, 19% hypertension/renal vascular disease, 11% glomerulonephritis and 46% other causes). Survival after kidney transplantation was adjusted using fixed values for age (50 years), sex (63% men) and primary renal disease (14% diabetes mellitus, 10% hypertension/renal vascular disease, 23% glomerulonephritis and 53% other causes). These figures are based on the data from the following registries providing individual patient data: Austria, Belgium (Dutch-speaking), Belgium (French-speaking), Bosnia and Herzegovina, Denmark, Finland, France, Greece, Iceland, Norway, Spain (Andalusia), Spain (Aragon), Spain (Asturias), Spain (Basque country), Spain (Cantabria), Spain (Castile and León), Spain (Castile-La Mancha), Spain (Catalonia), Spain (Community of Madrid), Spain (Extremadura), Spain (Galicia), Spain (Murcia), Spain (Valencian Region), Sweden, the Netherlands, the UK (England/Northern Ireland/Wales) and the UK (Scotland). 468 R. Boenink et al. FIGURE 14: Expected remaining lifetime of prevalent dialysis and kidney transplant patients (cohort 2015–19) and the general population (cohort 2015–19), by age. This figure is based on data from the following registries providing individual patient data: Austria, Belgium (Dutch-speaking), Belgium (French-speaking), Bosnia and Herzegovina, Denmark, Finland, France, Greece, Iceland, Norway, Spain (Andalusia), Spain (Aragon), Spain (Asturias), Spain (Basque country), Spain (Cantabria), Spain (Castille and León), Spain (Castille-La Mancha), Spain (Catalonia), Spain (Community of Madrid), Spain (Extremadura), Spain (Galicia), Spain (Murcia), Spain (Valencian Region), Sweden, the Netherlands, the UK (England/Northern Ireland/Wales) and the UK (Scotland). FIGURE 15: Incidence of RRT per million age-related population (p.m.a.r.p.) in 2019, on Day 1, by age, unadjusted. Results are based on data from registries providing individual patient data. ERA Registry Annual Report 2019 469 FIGURE 17: Prevalence of RRT per million age-related population (p.m.a.r.p.) on 31 December 2019, by age, unadjusted. Results are based on data from registries providing individual patient data. FIGURE 16: (A) Sex, (B) primary renal disease and (C) treatment modality distri- bution by age in incident patients accepted for RRT in 2019, on Day 1, unadjusted. Results are based on data from registries providing individual patient data. HD, haemodialysis; PD, peritoneal dialysis; Tx, kidney transplant. 470 R. Boenink et al. FIGURE 19: Kidney transplant counts and percentages by recipient age in 2019, unadjusted. Results are based on data from registries providing individual pa- tient data. The percentages in this figure sum up to 100% for all age groups to- gether. FIGURE 20: Donor type distribution by age in kidney transplant recipients, un- adjusted. Results are based on data from registries providing individual patient data. FIGURE 18: (A) Sex, (B) primary renal disease and (C) treatment modality distri- bution by age in prevalent patients on 31 December 2019, unadjusted. Results are based on data from registries providing individual patient data. HD, haemodial- ysis; PD, peritoneal dialysis; Tx, kidney transplant. ERA Registry Annual Report 2019 471 FIGURE 21: Patient survival probability by age for incident dialysis patients from Day 91 (left panel) and for patients receiving a first kidney transplant from the day of transplantation (right panel), adjusted for sex and primary renal disease. Results are based on data from registries providing individual patient data. SUPPLEMENTARY DATA outside the submitted work; and K.J.J. reports grants from ERA, during the conduct of the study. Supplementary data are available at ckj online. CONFLICT OF INTEREST STATEMENT ACKNOWLEDGEMENTS A.O. is the CKJ Editor-in-Chief. The ERA Registry would like to thank the patients and staff of all the dialysis and transplant units who have contributed data via their national and regional renal registries. In addition, we would APPENDIX 1. like to thank the persons and organizations listed in the para- Countries or regions providing individual patient data graph ‘Affiliated Registries’ for their contribution to the work of to the ERA Registry: Austria, Dutch-speaking Belgium, the ERA Registry. French-speaking Belgium, Bosnia and Herzegovina, Denmark, Estonia, Finland, France, Greece, Iceland, Mon- tenegro, Norway, Romania, Serbia, Sweden, Switzerland, the Netherlands, the UK, England/Northern Ireland/Wales and the FUNDING UK, Scotland, and the Spanish regions of Andalusia, Aragon, The ERA Registry is funded by the ERA. This article was written Asturias, Basque country, Canary Islands, Cantabria, Castile by R. Boenink et al. on behalf of the ERA Registry, which is an and León, Castile-La Mancha, Catalonia, Community of Madrid, official body of the ERA. In addition, S.B. reports personal fees Extremadura, Galicia, La Rioja, Murcia, Navarre and Valencian from AstraZeneca, outside the submitted work; A.D.-S. reports region. personal fees from Astellas and Fresenius, outside the submit- Countries or regions providing aggregated data to the ERA ted work; F.L. reports personal fees from MeditesPharma, outside Registry: Albania, Belarus, Cyprus, Czech Republic, Israel, Italy, the submitted work; R.P. reports grants from The Iceland Cen- Kosovo, Latvia, Lithuania, North Macedonia, Poland, Portugal, tre for Research, Landspitali University Hospital Research Fund Russia, Slovakia, Spain, Turkey and Ukraine. and University of Iceland Research Fund, outside the submitted Countries not providing data to the ERA Registry: An- work; P.F. reports grants from Finska läkaresällskapet and Liv och dorra, Armenia, Azerbaijan, Bulgaria, Croatia, Georgia, Hälsa, outside the submitted work; M.F.S.R. reports personal fees Germany, Hungary, Ireland, Liechtenstein, Luxembourg, Malta, from Baxter and Fresenius, outside the submitted work; A.O. re- Moldova, Monaco, San Marino and Slovenia. ports grants from Sanofi, and personal fees from Astellas, As- Countries part of the European Union (EU-28) popu- traZeneca, Amicus, Bayes, Fresenius Medical Care and Idorsia, lation in 2015 (used as reference population): Austria, 472 R. Boenink et al. Belgium, Bulgaria, Czech Republic, Croatia, Cyprus, Den- abdominal muscles (prune belly syndrome), renal vascular dis- mark, Germany, Estonia, Greece, Finland, France, Italy, Ireland, ease due to polyarteritis, Wegener’s granulomatosis, ischaemic Latvia, Lithuania, Luxembourg, Hungary, Malta, the Nether- renal disease/cholesterol embolism, glomerulonephritis re- lands, Poland, Portugal, Romania, Slovenia, Slovakia, Spain, lated to liver cirrhosis, cryoglobulinaemic glomerulonephri- Sweden and the UK. tis, myelomatosis/light chain deposit disease, amyloidosis, lupus erythematosus, Henoch–Schoenlein purpura, Goodpas- ture’s Syndrome, systemic sclerosis (scleroderma), haemolytic APPENDIX 2. uraemic syndrome (including Moschcowitz syndrome), multi- Miscellaneous primary renal disease: Nephropathy (interstitial) system disease—other (not mentioned above), tubular necrosis due to analgesic drugs, nephropathy (interstitial) due to cis- (irreversible) or cortical necrosis (different from 88), tuberculo- platinum, nephropathy (interstitial) due to cyclosporin A, lead- sis, gout, nephrocalcinosis and hypercalcaemic nephropathy, induced nephropathy (interstitial), drug-induced nephropathy Balkan nephropathy, kidney tumour, traumatic or surgical loss (interstitial) not mentioned above, cystic kidney disease— of kidney and other identified renal disorders. type unspecified, polycystic kidneys; infantile (recessive), medullary cystic disease; including nephronophtisis, cys- tic kidney disease—other specified type, hereditary/familial REFERENCES nephropathy—type unspecified, hereditary nephritis with 1. Kramer A, Boenink R, Stel VS et al. The ERA-EDTA Registry nerve deafness (Alport’s Syndrome), cystinosis, primary Annual Report 2018: a summary. Clin Kidney J 2021; 14: 107– oxalosis, Fabry’s disease, hereditary nephropathy—other 123 specified type, renal hypoplasia (congenital)—type unspecified, 2. Eurostat. Demography, Population Stock and Balance-Population oligomeganephronic hypoplasia, congenital renal dysplasia with National Level. https://ec.europa.eu/eurostat/web/main/data/ or without urinary tract malformation, syndrome of agenesis of database (August 2021, date last accessed)