Information on National and Regional Registries

National and Regional Registries
Information on national and regional registries

Information on National and Regional Registries

On this page national and regional registries can present their contact details and provide information on their work.

Belgium, Dutch-speaking
Bosnia and Herzegovina
Croatia
Cyprus
Czech Republic
Denmark
Estonia
Finland
Greece
Iceland
Italy
Latvia
Lithuania
North Macedonia
Norway
Portugal
Romania
Russia
Serbia
Slovenia
Spain, Andalusia
Spain, Basque country
Spain, Cantabria
Spain, Catalonia
Spain, Valencian region
Sweden
Switzerland
Tunisia
Turkey
Ukraine
United Kingdom, England/Wales/Northern Ireland
United Kingdom, Scotland

Belgium, Dutch-speaking


Acronym / abbreviation	NBVN
Street	c/o UZ Antwerp, Dept. Nephrology and Hypertension Wilrijkstraat 10
Postal code	2650
City	Edegem
Region	Dutch-speaking
Country	Belgium
Website	http://www.nbvn.be
Chairman of National Society of Nephrology	Prof. dr. Mileine Couttenye, University Hospital Antwerp (UZA)
Chairman of Registry	Johan De Meester
Director of Registry	Johan de Meester
Date of Establishment	1996
The data collected	Name First name Date of birth Gender Place of residence Renal diagnosis Weight at start of treatment Length at start of treatment Creatinine at start of treatment Date of death Cause of death Date start of renal replacement therapy Treatment modality Date 1st consult with nephrologist before start of renal replacement therapy Comorbidity (Cerebro Vascular Disease, Ischaemic Heart Disease, Peripheral Vascular Disease, Diabetes mellitus, Malignancy, Congestive heart failure) [January 1, 2010] Comorbidity (arrhythmias, severe mental disorders) [January 1, 2016] Smoking at start of treatment [January 1, 2014] Renal Transplant listing at start of treatment [January 1, 2014] Amputation at start of treatment [January 1, 2014] Living situation at start of treatment [January 1, 2014] Serum Albumin at start of treatment [January 1, 2014] Vascular access at start of hemodialysis treatment [January 1, 2014]
Latest annual report	The latest annual report is from 2017 and is available on our website http://www.nbvn.be.
Paediatric data included	Until 2000; thereafter – RICH-Q & ESPN / ERA-EDTA Registry

Bosnia and Herzegovina


Street	Clinical Center University of Sarajevo, Bolnicka 25
Postal code	71000
City	Sarajevo
Country	Bosnia and Herzegovina
Website	https://undt.ba/
President of National Society of Nephrology	Halima Resić, MD, PhD
Chairman of Registry	Besim Prnjavorac,MD,PhD
Director of Registry	Halima Resić, MD, PhD
Date of Establishment	September 2000
The data collected	Incident and prevalent RRT patients Date of birth and gender Date of start of RRT and primary renal disease Treatment modality (HD, HDF, HF, PD, transplantation) Treatment with EPO (Data collected by 2016) Blood transmitted diseases (Hepatitis C, B, HIV) Type of vascular access Date and cause of death Data about acute renal failure Data about renal transplantation Survival data of dialysis patients
Latest annual report	2013; Monography: “Renal Replacement Therapy in Bosnian and Herzegovina 2001-2009” ; Authors: Halima Resić and Enisa Me?ić has been published in 2010. Latest monography, fifteen years of Bosnia and Herzegovina Renal Registry will be published in the future. 2016; Monography: “Renal Replacement Therapy in Bosnia and Herzegovina 2001-2014”; Authors: Halima Resić and Enisa Me?ić has been published in 2015. RRT B&H-GENERAL SUMMARY DATA_2002-2016.pdf (https://undt.ba/en_US/registar/godisnji-izvjestaji)
Paediatric data included	Yes
Further information	Available on the web site https://undt.ba/en_US/

Croatia


Acronym / abbreviation	CRRRT
Street	Croatian Medical Association Croatian Society of Nephrology, Dialysis, and Transplantation SUBICEVA 9
Postal code	10000
City	Zagreb
Country	Croatia
Website	https://www.hdndt.org/registar-nadomjestanja-bubrezne-funkcije
Chairman of National Society of Nephrology	Prof Mladen Knotek
Chairman of Registry	Prof Ivan Bubić
Date of Establishment	15-05-2001
The data collected	Identification number Date of birth Gender Date of start of RRT Primary renal disease Type of treatment (HD, PD, TX) Date of treatment change Centre of treatment, centre of arrival, centre of departure Date of death Cause of death
Latest annual report	2014, on the website
Paediatric data included	Yes
Further information	Special areas of interest: trends in incidence and prevalence of RRT participation of methods of RRT survival on RRT diabetic nephropathy endemic nephropathy glomerulonephritis

Cyprus


Street	14 Thasou, RITA COURT 17, Office 501
Postal code	1087
City	Lefkosia
Country	Cyprus
Website	www.nek.org.cy/en/
Chairman of National Society of Nephrology	Dr. Kyriakos Ioannou
Chairman of Registry	Dr. Kyriakos Ioannou
Director of Registry	Dr. Kyriakos Ioannou
Date of Establishment	April 2015
The data collected	100% coverage RRT data patient data collected by ERA-EDTA Registry gender age date of first RRT primary renal disease number of incident patients dialysis modalities data data on day 91 number of transplants per year (Living related / unrelated and Cadaver)
Paediatric data included	yes

Czech Republic


Acronym / abbreviation	RDP
Street	U nemocnice 2
Postal code	12808
City	Prague
Region	whole country
Country	Czech Republic
Website	http://www.nefro.cz
Chairman of National Society of Nephrology	Prof. Vladimir Tesar, MD, PhD, MBA, FERA, FASN
Chairman of Registry	Prof. Ivan Rychlik, MD, PhD, FERA, FASN
Director of Registry	Prof. Ivan Rychlik, MD, PhD, FERA, FASN
Date of Establishment	1.1.2006
The data collected	A full list of the dataset is provided on the website. Center data: location number of beds number of monitors number of shifts/wk water treatment number of staff Patient data on entry: Surname, Forename Date of Birth Sex Postcode of home address Primary Renal Diagnosis (PRD) [ICD-10 codes] Date of PRD assessment Co-morbidities [ICD-10 codes] RRT start date Periodical data: Dialysis and transplantation events Report all changes in methods or place of renal replacement therapy with date Weight/height Dialysis Adequacy Haemodialysis Peritoneal Dialysis

Denmark


Acronym / abbreviation	DNR
Street	Department of Medicine Holbaek Hospital Smedelundsgade 60
Postal code	4300
City	Holbaek
Region	Zealand
Country	Denmark
Website	http://www.nephrology.dk
Chairman of National Society of Nephrology	Helle Thiesson
Chairman of Registry	Helle Thiesson
Director of Registry	Kristine Hommel
Date of Establishment	1990
The data collected	All actively treated ESRD patients Name and national identity number Date of birth Sex Referral Date First nephrology consultation date Renal diagnosis Date of death Cause of Death Immigration and Emigration Date(s) Planned/unplanned dialysis start Causes of unplanned dialysis start Dialysis access at first dialysis Dates and location of all modality changes Modalities: Center-HD Limited Care HD Home HD CAPD APD Hybrid dialysis (HD+PD) Assisted APD (professional) Assisted CAPD (professional) Hospital IPD transplant graft funcion acute rejection (with Banff classification) graft loss (with cause) Transplant donor living/dead Date of all peritonitis episodes (PD only) Tissue A, B, AB and DR matches and mismatches Donor family relationship Date of transfer between centers Charlson Comorbidity Index at ESRD and at every transplantation Biochemistry once yearly: Hemoglobin ferritin iron transferrin urea creatinine albumin calcium-ion phosphate PTH cholesterol HDL-cholesterol LDL-cholesterol Triglyceride bicarbonate 25-hydroxyvitamin D C-reactive protein
Latest annual report	2017
Paediatric data included	Yes

Estonia


Street	6 Puusepa Str.
Postal code	51014
City	Tartu
Country	Estonia
Chairman of National Society of Nephrology	dr. Mai Rosenberg
The data collected	treatment facility age gender date of the start of RRT number of RRT patients number of prevalent patients primary renal diagnosis comorbid conditions, complications height, dry weight, BMI residual renal function registration on transplantation waiting list immuunosupressive therapy date and cause of death
Latest annual report	2014, on the website
Paediatric data included	Yes

Finland


Street	Ratamestarinkatu 7 A, 7th floor
Postal code	FIN-00520
City	Helsinki
Country	Finland
Website	https://www.muma.fi/liitto/suomen_munuaistautirekisteri/finnish_registry_for_kidney_diseases
Chairman of National Society of Nephrology	Virpi Rauta
Chairman of Registry	Per-Henrik Groop
Director of Registry	Jaakko Helve
Date of Establishment	1989
The data collected	100% coverage of all RRT patients Core data reported to ERA-EDTA Registry Additionally laboratory data and data on comorbidity
Latest annual report	The latest annual report was published in 2021 with data until 31 December 2019.
Paediatric data included	Yes
Further information	Annual Report available at https://www.muma.fi/liitto/suomen_munuaistautirekisteri/finnish_registry_for_kidney_diseases

Greece


Street	General Hospital of Athens “G.Gennimatas” – YSE – 154 Messogion Ave
Postal code	11527
City	Athens
Country	Greece
Chairman of National Society of Nephrology	Papadopoulou Dorothea
Chairman of Registry	Dr. George Moustakas
Director of Registry	Dr. George Moustakas
Date of Establishment	2000
The data collected	RRT units data, patient identification and social security status data, patient data, including: gender, date of birth, primary renal disease (ERA-EDTA codes), date of start first ever RRT, type of event / treatment, date of event, treatment center, cause of death (ERA-EDTA codes).
Paediatric data included	Yes
Further information	The Hellenic Renal Registry, started functioning as a national registry (contributing data to the new ERA-EDTA Registry) in 2000, under the Board of Registry Coordination and Control of RRT, which keeps the records of RRT patients from 1986.

Iceland


Street	Landspitali-The National University Hospital of Iceland, Hringbraut
Postal code	101
City	Reykjavik
Country	Iceland
Chairman of National Society of Nephrology	Sunna Snaedal Jonsdottir, MD, PhD
Chairman of Registry	Runolfur Palsson, MD, FRCP, FACP, FASN
Director of Registry	Runolfur Palsson, MD, FRCP, FACP, FASN
Date of Establishment	1 January 1970
The data collected	The registry collects data on all patients receiving renal replacement therapy for end-stage kidney failure in Iceland. The following information is collected: Name Date of birth Gender Native country Renal diagnosis Comorbid conditions Date start of renal replacement therapy Treatment modality (hemodialysis, peritoneal dialysis, kidney transplantation) Change of treatment modality Date of death Cause of death
Latest annual report	Has not been issued. The plan is to do that in the future.
Paediatric data included	Yes

Italy


Acronym / abbreviation	RIDT
Street	c/o Segreteria Società Italiana di Nefrologia Viale dell´Università, 11
Postal code	00185
City	Roma
Country	Italy
Website	https://ridt.sinitaly.org/
Chairman of National Society of Nephrology	Prof. Loreto Gesualdo
Chairman of Registry	Dr. Maurizio Postorino
Date of Establishment	1996
The data collected	from 1998 to 2002 by aggregated data from 2003 to 2010 by patient data from 2010 by aggregated data
Latest annual report	2015 available on the website https://ridt.sinitaly.org
Paediatric data included	No, the pediatric Registry is independent

Latvia


Street	Nephrological Dpt., Pilsonu 13
Postal code	LV-1002
City	Riga
Country	Latvia
Website	nefrologs.lv
Chairman of National Society of Nephrology	Viktorija Kuzema
Chairman of Registry	Harijs Cernevskis
Date of Establishment	1996
The data collected	Number of RRT centres, number of patients in each center Incidence of RRT patients, age, gender, primary diagnosis, treatment modality Prevalence of RRT patients, by treatment modality, age, gender, primary diagnosis Mortality rate, causes of death, date of death
Paediatric data included	Yes

Lithuania


Street	Eiveniu 2
Postal code	LT-50009
City	Kaunas
Country	Lithuania
Chairman of National Society of Nephrology	Prof. Inga Arune Bumblyte
Chairman of Registry	Prof. Edita Ziginskiene
Date of Establishment	1996 (data about hemodialysis patients), 2013 – all RRT modalities
The data collected	Number of RRT centres, number of patients in each center Incidence of RRT patients Prevalence of RRT patients by treatment modality Patients on dialysis: gender, age, primary renal diagnosis, date of the start of dialysis, mortality rate, causes of death
Paediatric data included	yes

North Macedonia


Acronym / abbreviation	MRR
Street	University Clinic of Nephrology Vodnjanska 17
Postal code	1000
City	Skopje
Country	North Macedonia
Chairman of the Macedonian Society of Nephrology, Dialysis, Transplantation and Artificial Organs	Prof. Goce Spasovski
Chairman of Registry	Prof. Olivera Stojceva-Taneva
Director of Registry	Prof. Olivera Stojceva-Taneva
Date of Establishment	1998
The data collected	RRT units data patient data collected by ERA-EDTA Registry gender age date of first RRT number of incident and prevalent patients number of transplants per year established RRT therapy (pmp and percentage) by cause of renal failure (pmp and percentage)
Latest annual report	2017
Paediatric data included	Yes, up to 2006
Further information	Registry data presented as oral presentation during the 7th BANTAO Meeting in Ohrid 2006, registry data presented as poster on the ERA-EDTA Congress in Barcelona 2007(at the registry area) and registry data presented during the 8th BANTAO Congress in Belgrade 2007. The project (a population-based study) on the prevalence of stages of CKD in the general population in FYR of Macedonia (SKROBB) completed. Registry data presented at the Registry Meeting of the ERA-EDTA Congresses in 2009 and 2011.

Norway


Street	Oslo University Hospital – Rikshospitalet
Postal code	N-0424
City	Oslo
Country	Norway
Website	https://www.nephro.no/
Chairman of National Society of Nephrology	Dr Marit Solbu
Chairman of Registry	Dr Anna V. Reisæter
Director of Registry	Anders Åsberg PhD
Date of Establishment	1994
The data collected	The registry collects data on all patients receiving RRT for chronic renal failure in Norway. From 2016, the registry also collects data on patients in CKD5 not receiving RRT and also data on all patients from which a kidney biopsy is obtained from the native kidneys. At start, renal diagnosis (EDTA code), a limited set of comorbidity data, potential eligibility for transplantation, and treatment mode are recorded. Each major change of treatment mode is recorded, cause of death is recorded using EDTA-codes. At start of each year a status report, including a limited set of treatment details, quality parameters and comorbidities/complications during the past treatment year is collected (> 95% compliance).
Latest annual report	2018, on the website
Paediatric data included	Yes

Portugal


Street	Largo do Campo Pequeno, nº2 – 2º A
Postal code	1000-078
City	Lisboa
Country	Portugal
Website	https://www.spnefro.pt/
Chairman of National Society of Nephrology	Dr. Aníbal Ferreira
Chairman of Registry	Dr. Ana Galvão
Date of Establishment	This new registry (the former was lost) established 1997
The data collected	Aggregated data from 1997
Latest annual report	2018, on the website
Paediatric data included	Yes

Romania


Acronym / abbreviation	RRR
Street	4 Calea Grivitei, sector 1
Postal code	010731
City	Bucharest
Country	Romania
Website	https://www.srnefro.ro/registre/
Chairman of National Society of Nephrology	Adrian Constantin Covic
Chairman of Registry	Gabriel Mircescu
Director of Registry	Liliana Garneata
Date of Establishment	1993
The data collected	Aggregated data on prevalent HD, PD and RT patients until 2005. Starting from 2006 – individual patient data on incident as well as prevalent RRT patients: date of birth gender cause of renal failure date of start of first RRT history of RRT (dates and changes of modality) treatment centre date and cause of death information concerning transfer from or to another renal registries. Several quality parameters became mandatory starting Jan 1^st, 2020. So far, few data on quality of treatment are available.
Latest annual report	Annual report 2018
Paediatric data included	Yes
whereaboutspaediatric	Paediatric data sent also to ESPN Registry

Russia


Street	Russian Dialysis Society Pekhotnaya str., 3 building 2
Postal code	123182
City	Moscow
Country	Russia
Website	http://www.nephro.ru
Chairman of National Society of Nephrology (Russian Dialysis Society)	Elena Zakharova
Chairman of Registry	Anton Andrusev
Director of Registry	Anton Andrusev
Date of Establishment	1998
The data collected	General information: HD stations count Equipment Number of patients on HD, PD, Tx EPO use Hospitalization rate Hepatitis infection rate Acute renal failure treatment
Latest annual report	2018 (published as complete report)
Paediatric data included	Yes, Pediatric part is managed by Dr. Elena Molchanova

Serbia


Acronym / abbreviation	ARDTS
Street	Pasterova 2
Postal code	11000
City	Beograd
Country	Serbia
Website	www.udruzenjenefrologa.com
Chairman of National Society of Nephrology	Prof dr Radomir Naumovic
Chairman of Registry	assist. prof. Mirjana Lausevic
Date of Establishment	1997
The data collected	From 1997 to 2002 aggregated data were collected by center questionnaire and for 2003 and 2004 individual patient data were collected by specially designed software. Data were regularly submitted to ERA EDTA Registry and published in Section B. After four year break aggregated data were collected in 2009 and 2010 by center questionnaire and submitted to Section B of ERA EDTA Registry. Since 2011 individual data are collected and submitted to ERA EDTA Registry to be analyzed and published in Section A of Annual report. In addition, the Annual report of our National Registry is published regularly.
Latest annual report	2016
Paediatric data included	Yes

Slovenia


Acronym / abbreviation	SLO RRT Registry
Street	Zaloska 7
Postal code	1000
City	Ljubljana
Country	Slovenia
Website	www.nephro-slovenia.si
Chairman of National Society of Nephrology	Assoc. Prof. Damjan Kovač, MD, PhD
Chairman of Registry	Prof. Jadranka Buturovic Ponikvar, MD, PhD
Date of Establishment	January 1st 1999 – aggregated data from renal centers January 1st 2005 – individual patient data (for 2004)
The data collected	For ALL RRT patients: Age, sex, type of RRT, primary renal disease, presence of diabetes mellitus/type 1 or 2, date of the first RRT, dates of changes of type of RRT therapy, transfer from other renal center in previous year, *epoetin therapy in the last week of December: type, dose, route of application not collected from 2011 For ALL DIALYSIS patients: The information about being included on the waiting list for cadaveric kidney transplantation If not included, why: medical contraindication refusal in preparation age other (specify) For ALL HEMODIALYSIS patients: Type of hemodialysis (BHD, on-line HDF, on-line HF, acetate free biofiltration) Number of HD sessions per week Hours on hemodialysis per week If HF/HDF: volume of infusion (liters), type of infusion (predilutional, postdilutional, combined) Type of dialyser on the last week of December Dry body weight on the last week of December (kg) Blood flow – last week of December (ml/min) Single needle procedure last week of December: yes/no Vascular access on December 31st: AV fistula: Native/PTFE Forearm/cubital arm/thigh Right/left Hemodialysis catheter: Jugular/subclavian/femoral Right/left Temporary (uncuffed)/sylastic (cuffed) Single lumen/double lumen For ALL DIALYSIS CENTERS: Number of prevalent patients on December 31 Number of dialysis stations on December 31 Number of patients “positive” for transmissive disease in the center: HBV pos HCV pos MRSA pos HIV Type of isolation of “positive” patients (separately for HBV pos, HCB pos, MRSA pos): dedicated rooms dedicated monitors last in the shift No isolation Number of staff in dialysis centers: Physicians Graduated nurses High school nurses Administrative workers Other Number and type of hemodialysis monitors Blood sampling for laboratory values: The first or midweek dialysis CRP levels – high sensitivity method yes/no Number of chronic hemodialysis procedures reimbursed from January 1 to December 31 Number of acute hemodialysis procedures reimbursed from January 1 to December 31 Number of patients treated by dialysis for acute kidney injury: Intermittent dialysis CRRT Combination CRRT/intermittent PD Number of deaths of dialysis patients from January 1 to December 31
Latest annual report	Excerpts from 2013 data: https://www.ncbi.nlm.nih.gov/pubmed/27312905
Paediatric data included	Yes. Paediatric data are included in RRT registry, but are also sent as individual data to ESPN Registry.

Spain, Andalusia


Acronym / abbreviation	SICATA
Street	Avda de la Constitución, 18
Postal code	41071
City	Sevilla
Region	Andalusia
Country	Spain
Chairman of Registry	Pablo Castro de la Nuez
Director of Registry	José Miguel Pérez Villares
Date of Establishment	1984
The data collected	Date of birth sex primary renal disease comorbid conditions date of start of RRT treatment modality registration on transplant waiting list treatment centre date of transfer between renal centres Hepatitis B and C serology, HIV serology transplant data (origin of graft, cause of failure) date of death and cause of death. For HD patients, among others: height dry weight body water residual renal function vascular access type of puncture dialysis membrane type membrane surface blood flow weight loss creatinine before dialysis urea before and after dialysis urea in urine PCR serum albumin hemoglobin hematocrit ferritin transferrin saturation EPO parenteral iron calcium phosphorus PTH
Latest annual report	2018
Paediatric data included	Yes

Spain, Basque country


Acronym / abbreviation	UNIPAR
Street	Coordinación de Trasplantes Osakidetza – Servicio Vasco de salud Maria Diaz de Haro, Nº60-1a planta.
Postal code	48010
City	Bilbao
Region	Basque country
Country	Spain
Chairman of Registry	Renal transplant Subcommittee
Director of Registry	Dr. J. Aranzabal, Dra. A. Magaz
Date of Establishment	1991
The data collected	Social and identification data (name, gender, date of birth, education, address, phone,Province,Sanitary Region) Primary Renal Disease Co-morbid conditions (Type of malignancy, Diabetes Mellitus, Neoplasia) Serology data (Hepatitis B and C, HIV) Treatment data (date, type, cause, changes) Transplant data (date, type, immunosuppressant drugs, Hospitalized data) Haemodialysis data Peritoneal Dialysis data Transplant waiting list data Mortality data (date, cause, treatment at the moment of death)
Latest annual report	Informe Epidemiológico Pacientes Renales 2018/2018 Giltzurrun-Gaixoei buruzko txosten epidemiologikoa (From 1991, uninterrupted)
Paediatric data included	Yes

Spain, Cantabria


Street	Hospital Valdecilla Avda de Valdecilla
Postal code	39008
City	Santander
Region	Cantabria
Country	Spain
Website	https://senefro.org/
Chairman of National Society of Nephrology	Mª Dolores del Pino y Pino
Chairman of Registry	Beatriz Mahillo
Date of Establishment	1972
The data collected	starting in 1996 like aggregated data, and actually: patient data, including: gender, date of birth, primary renal disease (ERA-EDTA codes), date of start first ever RRT, type of event / treatment, date of event, treatment center, cause of death (ERA-EDTA codes)
Latest annual report	2018
Paediatric data included	No

Spain, Catalonia


Acronym / abbreviation	RMRC
Street	Edifici Dr. Frederic Duran i Jordà. Passeig Taulat, 106-116
Postal code	08005
City	Barcelona
Region	Catalonia
Country	Spain
Website	http://trasplantaments.gencat.cat
Director of Registry	Jaume Tort i Bardolet (Director of the OCATT)
Manager of the Registry	Nephrologists comission
Technicians of the Registry	Jordi Comas
Date of Establishment	January 1984
The data collected	Patient identification data (name, gender, date of birth, addres,…) Social data (family structure, educational level) Renal Replacement outside Catalonia Primary renal disease (type, and presentation, diagnosis made by?) Morbidity (Ischaemic heart disease, Cardiomyopathy, Cardiac arrythmia, Stroke, Peripheral vascular disease, Neoplasia, Chronic obstructive lung disease, Diabetes Mellitus, Gastrointestinal disease, Cirrhosis and other chronic liver disease, Esophagus, stomach and dodenum diseases, AHT, irreversible serious visual deficit, autonomy functional level, cardiac surgery,…) Mortality data (cause and data of death, functioning transplant at the moment of death?) Treatment data (type, waiting list for transplant, cause of change in treatment, type of vascular access, peritonitis, EPO, cold ischaemia of transplanted kidneys, acute tubular necrosis, days of post-transplant HD, immunosuppressant drugs,…) Clinical data (height, weight, creatinine, cholesterol, triglycerides, serology, albumin,…) Haemodialysis adequacy (Hb, Kt/V, sessions and hours for dialysis,…) Donor data (age, gender, cause of death, weight, creatinine, serology,…) Immunological data (HLA-DR matches, HLA-A matches, HLA-B matches, maximum and final percentage antibodies,…)
Latest annual report	Statistical report of 2019, including an English version, available on the website.
Paediatric data included	Yes

Spain, Valencian region


Acronym / abbreviation	REMRENAL
Street	Avd. Catalunya, 21
Postal code	46020
City	Valencia
Region	Comunitat Valenciana
Country	Spain
Website	www.sp.san.gva.es
Chairman of National Society of Nephrology	Dr. José Luiz Górriz Teruel
Chairman of Registry	DGSP Ofèlia Gimeno Forner
Director of Registry	Dr. Óscar Zurriaga
Technician of the Registry	RN Amparo Bernat Hoyos
Date of Establishment	1992
The data collected	Name Sex Age Residence Level of education Occupation Treatment facility Primary Renal Disease Date of beginning of renal replacement therapy Risk factor (at incidence) Waiting for a transplantation (yes or no and date of waiting list) Renal replacement therapy (type and date) Virus markers Exit: death (date and cause), others
Latest annual report	2018, on the website
Paediatric data included	Yes

Sweden


Acronym / abbreviation	SNR
Street	SNR Medicin expedition plan 5 Länssjukhuset Ryhov
Postal code	SE-551 85
City	Jönköping
Country	Sweden
Website	https://www.medscinet.net/snr/
Chairman of Registry	Maria Stendahl
Director of Registry	Helena Rydell
Date of Establishment	1991
The data collected	Name Personal code (incl date of birth, sex) Place of living Nephrological disease Co-morbid factors ([type of] malignancy, diabetes, manifestations of arteriosclerosis) Mode of treatment Date of start of treatment Organ donor at transplantation Date of transplantationPancreas- or liver transplantation Information given to patient about the registry Change of treatment Date of death Cause of death Chronic kidney disease data GFR Medication Blood pressure Lab Etc Cross-sectional dialysis quality data Treatment modality Kt/V Vascular access details Lab Etc Biopsy data Clinical data Complications Diagnosis Lab Nutritional data Patient Reported Outcome Measures RAND-36
Latest annual report	By request from the registry, also on website
Paediatric data included	Yes
Further information	On-line collection of data.

Switzerland


Street	Tièchestrasse 99
Postal code	CH-8037
City	Zurich
Country	Switzerland
Website	http://www.swissnephrology.ch/srrqap/
Chairman of National Society of Nephrology	Prof. Rudolf P. Wüthrich
Chairman of Registry	Prof. Michael Dickenmann
Director of Registry	Prof. Patrice Max Ambühl, M.D.
Date of Establishment	2006
The data collected	Data are collected from both hemodialysis and peritoneal dialysis patients. Date of birth Gender Geographic region Ethnicity Nationality Original renal diagnosis If renal diagnosis is bioptically confirmed (yes/no/unknown) Date start of renal replacement therapy Treatment modality at start of renal replacement therapy Actual treatment modality Time on dialysis (weekly) Weight before and after treatment Height Amputation (one leg, both legs) Hypertension (yes/no) Antihypertensiva (yes/no) Blood pressure Kt/V Rest renal function Laboratory data: Hemoglobin, Ferritin, Calcium, Phosphate, PTH Iron substitution or epo substitution (yes/no) Comorbidities / Charlson Score Date of death Cause of death Recovery of renal function Loss to follow up Stop treatment (without recovery) Change in dialysis modality Previous renal transplants and transplantation during actual data census Actual Vascular access during hemodialysis treatment, including number of changes of vascular access In addition, data are gathered on prevalent transplant patients: Date transplantation Patients age and sex Original renal disease Type of graft Type of donation Living status of both patient and graft
Paediatric data included	yes
Further information	Relaunch in 2012. Contributing data to the ERA-EDTA registry since 2015 (2013 census).

Tunisia


Street	Ministry of Public Health Place Bab Saadoun
Postal code	1006
City	Tunis
Country	Tunisia
Chairman of National Society of Nephrology	Pr Jamil Hachicha
Chairman of Registry	Dr Chedly Mahjooubi
Director of Registry	Dr Chedli Mahjoubi
Date of Establishment	1990
The data collected	1991
Latest annual report	2010
Paediatric data included	Yes

Turkey


Acronym / abbreviation	TSNNR
Street	Valikonaği Cd. Şakayik Sok. Polat Apt. 63/1 Nişantaşı
Postal code	34365
City	Istanbul
Country	Turkey
Website	www.nefroloji.org.tr/
Chairman of National Society of Nephrology	Prof. Dr. Gültekin Süleymanlar
Chairman of Registry	Prof. Dr. Gültekin Süleymanlar
Coordinator of Registry	Prof. Dr. Nurhan Seyahi
Date of Establishment	1990
The data collected	Yearly: Center Data adult & pediatric on HD, PD and Transplantation Patient Data adult & pediatric on HD, PD and Transplantation (since 1995)
Latest annual report	2018
Paediatric data included	Yes
whereaboutspaediatric	Collected yearly from paediatric units (Center & patient data)
Further information	Registry reports in English can be downloaded from the website

Ukraine


Acronym / abbreviation	URDS
Street	Degtyarivska 17B
Postal code	04050
City	Kiev
Country	Ukraine
Website	inephrology.kiev.ua
Chairman of National Society of Nephrology	Mykola Kolesnyk, MD, PhD
Chairman of Registry	Mykola Kolesnyk, MD, PhD
Date of Establishment	2003
The data collected	The register collects aggregated data from 2003 and individual patient data from 2006: basic data on patients with CKD, AKI and transplanted patients detailed data on renal replacement therapies (hemodialysis, peritoneal dialysis, renal transplantation)
Latest annual report	2018 provided to ERA-EDTA The latest annual report was published in 2020 with data until 31 December 2017
Paediatric data included	No

United Kingdom, England/Wales/Northern Ireland


Acronym / abbreviation	UKRR
Street	Brandon House Building 20a1 Southmead Road
Postal code	BS34 7RR
City	Bristol
Region	England/Wales/Northern Ireland
Country	United Kingdom
Website	https://www.renalreg.org
President of National Society of Nephrology	Dr Graham Lipkin
Medical Director of Registry	Dr James Medcalf
Director of Registry	Ron Cullen
Date of Establishment	1997
The data collected	Electronic data downloaded quarterly. Data are collected about the basic demographics of people on RRT (transplant, in-centre haemodialysis, home haemodialysis and peritoneal dialysis), including age, sex, ethnicity and deprivation, and the following clinical information: date first seen by nephrology primary renal disease (ERA-EDTA codes) co-morbidity at start of RRT all modality changes infections (bacteraemia, peritonitis, SARS-CoV-2 swab test) EPO prescribing blood pressure vascular access cause of death date of death quarterly biochemical data including: haemoglobin ferritin dialysis adequacy cholesterol glycosylated haemoglobin bone metabolism (calcium, phosphate, PTH). Some data items are also collected for patients with CKD pre-RRT in the UK or with an acute kidney injury (AKI) in England (AKI lab warning test scores – see the UKRR’s inaugural AKI report)
Latest annual report	UK Renal Registry 22nd Annual Report – data to 31/12/2018, on the website
Paediatric data included	Yes
Further information	UK Renal Association Guidelines https://renal.org/guidelines/ Leaflets for patients and doctors https://renal.org/information-resources/patient-leaflets/

United Kingdom, Scotland


Acronym / abbreviation	SRR
Street	Meridian Court, 5 Cadogan Street
Postal code	G2 6QE
City	Glasgow
Region	Scotland
Country	United Kingdom
Website	https://www.srr.scot.nhs.uk/
Chairman of National Society of Nephrology	Dr David Walbaum
Chairman of Registry	Dr Samira Bell
Director of Registry	Dr Jamie Traynor
Date of Establishment	1991
The data collected	A list of the Core Dataset is provided on the website. Surname, Forenames Date of Birth Sex Ethnic Group Address Postcode Health Board of residence Deprivation score Hospital Number for all hospitals attended as a renal patient Primary Renal Diagnosis [ERA-EDTA codes] Cause of Death [ERA-EDTA Codes] Dialysis and transplantation events Report all changes in methods or place of renal replacement therapy with date Weight Dialysis Adequacy Haemodialysis Peritoneal Dialysis Adjusted serum calcium concentration Serum phosphate concentration Serum albumin concentration Haemoglobin concentration Serum ferritin concentration Erythropoietic Drugs Dose Route Frequency Iron Dose Peritonitis episodes for PD Patients Serum Potassium Availability of suitable permanent access for first RRT The CHI (Community Health Index) This is a unique Scottish National Health Service Patient Identification number. Date patient was first referred to a Nephrologist Date patient joined transplant (waiting) list Serum creatinine before 1st RRT for established renal failure Annual survey of haemodilaysis patients Vascular access BP Location HD prescription
Latest annual report	2017, on the website
Paediatric data included	Yes
Further information	Publications concerning audit, quality assurance, needs assessment and service planning involving the SRR: The SRR Other reports and publications

ERA-EDTA Registry

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