The ERA Registry Annual Report 2020: a summary

Megan E Astley; Rianne Boenink; Samar Abd ElHafeez; Sara Trujillo-Alemán; Federico Arribas; Anders Åsberg; Pazit Beckerman; Samira Bell; María Encarnación Bouzas-Caamaño; Jordi Comas Farnés; Ana Amélia Galvão; Nikola Gjorgjievski; Vjollca Godanci Kelmendi; Rebecca Guidotti; Jaakko Helve; Alma Idrizi; Ólafur S Indriðason; Kyriakos Ioannou; Julia Kerschbaum; Kirill Komissarov; Pablo Castro de la Nuez; Mathilde Lassalle; Maurizio Nordio; Olga Lucía Rodríguez Arévalo; Carmen Santiuste; Nurhan Seyahi; María Fernanda Slon Roblero; Retha Steenkamp; Marc A G J Ten Dam; Elena V Zakharova; Edita Ziginskiene; Marjolein Bonthuis; Vianda S Stel; Alberto Ortiz; Kitty J Jager; Anneke Kramer

doi:10.1093/ckj/sfad087

The ERA Registry Annual Report 2020: a summary

Clin Kidney J. 2023 Apr 21;16(8):1330-1354. doi: 10.1093/ckj/sfad087. eCollection 2023 Aug.

Authors

Megan E Astley^{1

2}, Rianne Boenink^{1

3}, Samar Abd ElHafeez^{1

4}, Sara Trujillo-Alemán⁵, Federico Arribas⁶, Anders Åsberg⁷, Pazit Beckerman⁸, Samira Bell^{9

10}, María Encarnación Bouzas-Caamaño¹¹, Jordi Comas Farnés¹², Ana Amélia Galvão¹³, Nikola Gjorgjievski^{14

15}, Vjollca Godanci Kelmendi¹⁶, Rebecca Guidotti¹⁷, Jaakko Helve¹⁸, Alma Idrizi¹⁹, Ólafur S Indriðason²⁰, Kyriakos Ioannou²¹, Julia Kerschbaum²², Kirill Komissarov²³, Pablo Castro de la Nuez²⁴, Mathilde Lassalle²⁵, Maurizio Nordio²⁶, Olga Lucía Rodríguez Arévalo^{27

28}, Carmen Santiuste^{29

30}, Nurhan Seyahi³¹, María Fernanda Slon Roblero³², Retha Steenkamp³³, Marc A G J Ten Dam³⁴, Elena V Zakharova^{35

36}, Edita Ziginskiene^{37

38}, Marjolein Bonthuis^{1

39

40}, Vianda S Stel^{1

3}, Alberto Ortiz^{41

42}, Kitty J Jager^{1

3}, Anneke Kramer¹

Affiliations

¹ ERA Registry, Department of Medical Informatics, Amsterdam UMC location University of Amsterdam, Amsterdam, The Netherlands.
² Amsterdam Public Health, Health Behaviours & Chronic Diseases and Methodology, Amsterdam, The Netherlands.
³ Amsterdam Public Health, Quality of Care and Ageing & Later Life, Amsterdam, The Netherlands.
⁴ Epidemiology Department, High Institute of Public Health, Alexandria University, Alexandria, Egypt.
⁵ Health Quality Assessment and Information System Service, Dirección General de Programas Asistenciales, Servicio Canario de la Salud, Canary Islands, Spain.
⁶ Department of Aragon Health, General Direction of Health Care, Zaragoza, Spain.
⁷ The Norwegian Renal Registry, Department of Transplantation Medicine, Oslo University Hospital - Rikshospitalet, Oslo, Norway.
⁸ Sheba Medical Center, Ramat Gan, and School of Medicine, Tel Aviv University, Tel Aviv, Israel.
⁹ Scottish Renal Registry, Public Health Scotland, Glasgow, UK.
¹⁰ Division of Population Health & Genomics, University of Dundee, Ninewells Hospital, Dundee, United Kingdom.
¹¹ Regional Transplant Coordination of Galicia, Galician Health Service, Santiago de Compostela, Spain.
¹² Catalan Renal Registry, Catalan Transplant Organization, Health Department, Generalitat of Catalonia, Barcelona, Spain.
¹³ Portuguese Society of Nephrology, Coimbra, Portugal.
¹⁴ Hospital of Nephrology, Skopje, N. Macedonia.
¹⁵ Faculty of Medicine, University "SS Cyril and Methodius" Skopje, Skopje, N. Macedonia.
¹⁶ Nephrology Clinic, University Clinical Centre of Kosova, Prishtina, Kosova.
¹⁷ Institute of Nephrology, City Hospital Zurich, Zurich, Switzerland.
¹⁸ Finnish Registry for Kidney Diseases and Abdominal Center Nephrology, University of Helsinki and Helsinki University Central Hospital, Helsinki, Finland.
¹⁹ Service of Nephrology, UHC Mother Teresa, Tirana, Albania.
²⁰ Division of Nephrology, Landspitali-The National University Hospital of Iceland, Reykjavik, Iceland.
²¹ Cyprus Renal Registry, Nicosia, Cyprus.
²² Austrian Dialysis and Transplant Registry, Department of Internal Medicine IV-Nephrology and Hypertension, Medical University Innsbruck, Innsbruck, Austria.
²³ Minsk Scientific and Practical Center of Surgery, Transplantation and Hematology, Minsk, Belarus.
²⁴ SICATA: Information System of the Autonomous Coordination of Transplants of Andalusia, Seville, Andalucia, Spain.
²⁵ REIN Registry, Agence de la Biomédecine, Saint-Denis La Plaine, France.
²⁶ Division of Nephrology, AULSS 2, Treviso General Hospital, Treviso, Italy.
²⁷ Registry of Renal Patients of the Valencian Community, General Directorate of Public Health and Addictions, Ministry of Universal Health and Public Health, Valencia, Spain.
²⁸ Health and Well-being Technologies Program, Polytechnic University of Valencia, Valencia, Spain.
²⁹ Murcia Renal Registry, Department of Epidemiology, Murcia Regional Health Council, IMIB-Arrixaca, Murcia, Spain.
³⁰ CIBER Epidemiología y Salud Pública (CIBERESP), Madrid, Spain.
³¹ Department of Nephrology, Cerrahpaşa Medical Faculty, Istanbul University-Cerrahpaşa, Istanbul, Turkey.
³² Hospital Universitario de Navarra, Pamplona, Navarra, Spain.
³³ UK Renal Registry, Bristol, UK.
³⁴ Dutch Registry RENINE, Nefrovisie, Utrecht, The Netherlands.
³⁵ Nephrology, Botkin Hospital, Moscow, Russia.
³⁶ Nephrology and Hemodialysis, Russian Medical Academy of Continuing Professional Education, Moscow, Russia.
³⁷ Lithuanian Nephrology, Dialysis and Transplantation Association, Kaunas, Lithuania.
³⁸ Nephrology Department, Medical Academy, Lithuanian University of Health Sciences, Kaunas, Lithuania.
³⁹ Amsterdam Public Health, Quality of Care, Amsterdam, The Netherlands.
⁴⁰ ESPN/ERA Registry, Amsterdam UMC location University of Amsterdam, Department of Medical Informatics, Amsterdam, The Netherlands.
⁴¹ Department of Nephrology and Hypertension, IIS-Fundacion Jimenez Diaz UAM, Madrid, Spain.
⁴² Department of Medicine, Universidad Autonoma de Madrid, Madrid, Spain.

Abstract

Background: The European Renal Association (ERA) Registry collects data on kidney replacement therapy (KRT) in patients with ESKD. This paper is a summary of the ERA Registry Annual Report 2020, also including comparisons among primary renal disease (PRD) groups.

Methods: Data were collected from 52 national and regional registries from 34 European countries and countries bordering the Mediterranean Sea: 35 registries from 18 countries providing individual level data and 17 registries from 17 countries providing aggregated data. Using this data, KRT incidence and prevalence, kidney transplantation rates, expected remaining lifetimes and survival probabilities were calculated.

Results: A general population of 654.9 million people was covered by the ERA Registry in 2020. The overall incidence of KRT was 128 per million population (p.m.p.). In incident KRT patients, 54% were older than 65 years, 63% were men and the most common PRD was diabetes mellitus (21%). Regarding initial treatment modality in incident patients, 85% received haemodialysis (HD), 11% received peritoneal dialysis (PD) and 4% received a pre-emptive kidney transplant. On 31 December 2020, the prevalence of KRT was 931 p.m.p. In prevalent patients, 45% were older than 65 years, 60% were men and glomerulonephritis was the most common PRD (18%). Of these patients, 58% were on HD, 5% on PD and 37% were living with a kidney transplant. The overall kidney transplantation rate in 2020 was 28 p.m.p., with a majority of kidney grafts from deceased donors (71%). The unadjusted 5-year survival, based on incident dialysis patient from 2011-15, was 41.8%. For patients having received a deceased donor transplant, the unadjusted 5-year survival probability was 86.2% and for patients having received a living donor transplant it was 94.4%. When comparing data by PRD group, differences were found regarding the distribution of age groups, sex and treatment modality received.

Keywords: ESKD; dialysis; epidemiology; kidney transplantation; patient survival.