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
Acronym / abbreviation NBVN
Street c/o UZ Antwerp, Dept. Nephrology and Hypertension
Wilrijkstraat 10
Postal code 2650
City Edegem
Region Dutch-speaking
Country Belgium
Telephone +32 3821 34 71
Fax +32 3829 01 00
E-mail secretariaat@nbvn.be
Website http://www.nbvn.be
Chairman of National Society of Nephrology Prof. dr. Mileine Couttenye, University Hospital Antwerp (UZA)
Chairman of National Society E-mail secretariaat@nbvn.be
Chairman of Registry Johan De Meester
Chairman of Registry E-mail johan.demeester@aznikolaas.be
Director of Registry Johan de Meester
Director E-mail secretariaat@nbvn.be
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
Telephone +387 33 298 225
Fax +387 33 298 225
E-mail halimaresic@hotmail.com; halima.resic@undt.ba
Website http://www.undt.ba
President of National Society of Nephrology Halima Resić, MD, PhD
President of National Society E-mail halimaresic@hotmail.com; halima.resic@undt.ba
Chairman of Registry Besim Prnjavorac,MD,PhD
Chairman of Registry E-mail halimaresic@hotmail.com; pbesim@bih.net.ba
Director of Registry Halima Resić, MD, PhD
Director of Registry E-mail halimaresic@hotmail.com; halima.resic@undt.ba
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 ( http://undt.ba/en_US/registar/godisnji-izvjestaji)
Paediatric data included Yes
Further information Available on the web site http://www.undt.ba/
   
Croatia
Acronym / abbreviation CRRRT
Street Croatian Medical Association
Croatian Society of Nephrology, Dialysis, and Transplantation
SUBICEVA 9
Postal code 10000
City Zagreb
Country Croatia
Telephone +385 1 4693300
Fax +385 1 4655066
E-mail hrnbf@hdndt.org
Website http://www.hdndt.org/registar/hrvatski-registar-nadomjestanja-bubrezne-funkcije.html
Chairman of National Society of Nephrology Prof Mladen Knotek
Chairman of National Society E-mail mladen.knotek@gmail.com
Chairman of Registry Prof Ivan Bubić
Chairman of Registry E-mail bubic.ivan@gmail.com
Date of Establishment 15-05-2001
The data collected
  1. Identification number
  2. Date of birth
  3. Gender
  4. Date of start of RRT
  5. Primary renal disease
  6. Type of treatment (HD, PD, TX)
  7. Date of treatment change
  8. Centre of treatment, centre of arrival, centre of departure
  9. Date of death
  10. 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 11 Halkis, Ap.301, Aglantzia
Postal code 2107
City Lefkosia
Country Cyprus
Fax +35722206958
E-mail kyr_ioannou@hotmail.com
Chairman of National Society of Nephrology Dr. Kyriakos Ioannou
Chairman of National Society E-mail kyr_ioannou@hotmail.com
Chairman of Registry Dr. Kyriakos Ioannou
Chairman of Registry E-mail kyr_ioannou@hotmail.com
Director of Registry Dr. Kyriakos Ioannou
Director E-mail kyr_ioannou@hotmail.com
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 2
Region whole country
Country Czech Republic
Telephone +420 26716 2315
Fax +420 26716 2658
E-mail see chairman of Registry
Website http://www.nefro.cz
Chairman of National Society of Nephrology Prof. Vladimir Tesar, MD, PhD, MBA, FERA, FASN
Chairman of National Society E-mail vladimir.tesar@vfn.cz
Chairman of Registry Prof. Ivan Rychlik, MD, PhD, FERA, FASN
Chairman of Registry E-mail ivan.rychlik@gmail.com
Director of Registry Prof. Ivan Rychlik, MD, PhD, FERA, FASN
Director E-mail ivan.rychlik@gmail.com
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
Zealand University Hospital
Sygehusvej 10
Postal code 4000
City Roskilde
Region Copenhagen
Country Denmark
Telephone +45 42944116
E-mail heaf@dadlnet.dk
Website http://www.nephrology.dk
Chairman of National Society of Nephrology Helle Thiesson
Chairman of National Society E-mail helle.thiesson@rsyd.dk
Chairman of Registry Helle Thiesson
Chairman of Registry E-mail helle.thiesson@rsyd.dk
Director of Registry James Heaf
Director E-mail heaf@dadlnet.dk
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 2016
Paediatric data included Yes
   
Estonia
Street 6 Puusepa Str.
Postal code 51014
City Tartu
Country Estonia
Telephone +372 7 318 276
Fax +372 7 318 276
E-mail mai.rosenberg@kliinikum.ee
Chairman of National Society of Nephrology dr. Mai Rosenberg
Chairman of National Society E-mail mai.rosenberg@kliinikum.ee
The data collected
  1. treatment facility
  2. age
  3. gender
  4. date of the start of RRT
  5. number of RRT patients
  6. number of prevalent patients
  7. primary renal diagnosis
  8. comorbid conditions, complications
  9. height, dry weight, BMI
  10. residual renal function
  11. registration on transplantation waiting list
  12. immuunosupressive therapy
  13. date and cause of death
Latest annual report 2014, on the website
Paediatric data included Yes
   
Finland
Street Kumpulantie 1 A, 6th floor
Postal code FIN-00520
City Helsinki
Country Finland
E-mail anu.karhu@muma.fi
Website http://www.muma.fi/liitto/suomen_munuaistautirekisteri/finnish_registry_for_kidney_diseases
Chairman of National Society of Nephrology Kristiina Kananen
Chairman of National Society E-mail kristiina.kananen@kainuu.fi
Chairman of Registry Per-Henrik Groop
Chairman of Registry E-mail per-henrik.groop@helsinki.fi
Director of Registry Patrik Finne
Director E-mail patrik.finne@helsinki.fi
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 2018 with data until 31 December 2016.
Paediatric data included Yes
Further information Annual Report available at http://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
Fax +302107777740
E-mail ysenephro@gna-gennimatas.gr
Chairman of National Society of Nephrology Theofanis Apostolou
Chairman of National Society E-mail ene@ene.gr
Chairman of Registry N.Afentakis
Chairman of Registry E-mail ysenephro@gna-gennimatas.gr
Director of Registry N.Afentakis
Director E-mail ysenephro@gna-gennimatas.gr
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
Telephone +354 5436461
Fax +354 5436907
E-mail runolfur@landspitali.is
Chairman of National Society of Nephrology Sunna Snaedal Jonsdottir, MD, PhD
Chairman of National Society E-mail sunnasn@landspitali.is
Chairman of Registry Runolfur Palsson, MD, FACP, FASN
Chairman of Registry E-mail runolfur@landspitali.is
Director of Registry Runolfur Palsson, MD, FACP, FASN
Director E-mail runolfur@landspitali.is
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
Telephone +39 06 4465270
Fax +39 06 49270220
E-mail segreteria@sinitaly.org
Website http://ridt.sinitaly.org
Chairman of National Society of Nephrology Prof. Loreto Gesualdo
Chairman of National Society E-mail presidente@sinitaly.org
Chairman of Registry Dr. Maurizio Postorino
Chairman of Registry E-mail maurizio@postorino.eu
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 http://ridt.sinitaly.org
Paediatric data included No, the pediatric Registry is independent
whereaboutspaediatric Refer to Dr. Enrico Verrina
for further information
   
Latvia
Street Nephrological Dpt., Pilsonu 13
Postal code LV-1002
City Riga
Country Latvia
Telephone +37167065352
Fax +37167614168
E-mail lnsr@latnet.lv
Website nefrologs.lv
Chairman of National Society of Nephrology Viktorija Kuzema
Chairman of National Society E-mail viktorija.kuzema@gmail.com
Chairman of Registry Harijs Cernevskis
Chairman of Registry E-mail lnsr@latnet.lv
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
Telephone +37037327100
E-mail nefrologijos.klinika@kaunoklinikos.lt
Chairman of National Society of Nephrology Prof. Inga Arune Bumblyte
Chairman of National Society E-mail ingabumblyte@gmail.com
Chairman of Registry Prof. Edita Ziginskiene
Chairman of Registry E-mail edita.ziginskiene@kaunoklinikos.lt
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
   
Macedonia
Acronym / abbreviation MRR
Street University Clinic of Nephrology
Vodnjanska 17
Postal code 1000
City Skopje
Country Macedonia
Telephone +389 2 3147 277; +389 2 3223 501
Fax +389 2 3226 796
E-mail ostojcevataneva@yahoo.com
Chairman of the Macedonian Society of Nephrology, Dialysis, Transplantation and Artificial Organs Prof. Goce Spasovski
Chairman of the Macedonian Society of Nephrology, Dialysis, Transplantation and Artificial Organs E-mail spasovski.goce@gmail.com
Chairman of Registry Prof. Olivera Stojceva-Taneva
Chairman of Registry E-mail ostojcevataneva@yahoo.com
Director of Registry Prof. Olivera Stojceva-Taneva
Director E-mail ostojcevataneva@yahoo.com
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 2014
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
Telephone +47 23073662
Fax +47 23074678
E-mail areisate@ous-hf.no
Website http://www.nephro.no
Chairman of National Society of Nephrology Dr Marit Solbu
Chairman of National Society E-mail marit.solbu@unn.no
Chairman of Registry Dr Anna V. Reisæter
Chairman of Registry E-mail areisate@ous-hf.no
Director of Registry Anders Åsberg PhD
Director E-mail aaasbe@ous-hf.no
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 2017, on the website
Paediatric data included Yes
   
Portugal
Street Largo do Campo Pequeno, nº2 - 2º A
Postal code 1000-078
City Lisboa
Country Portugal
Telephone (+351) 217 970 187
Fax (+351) 217 941 142
E-mail geral@spnefro.pt
Website http://www.spnefro.pt
Chairman of National Society of Nephrology Dr. Aníbal Ferreira
Chairman of National Society E-mail febnolasco@gmail.com
Chairman of Registry Dr. Fernando José Gordinho Rocha Maio Macário
Chairman of Registry E-mail fernando.macario@netcabo.pt
Date of Establishment This new registry (the former was lost) established 1997
The data collected Aggregated data from 1997
Latest annual report 2017, on the website
Paediatric data included Yes
   
Romania
Acronym / abbreviation RRR
Street 4 Calea Grivitei, sector 1
Postal code 010731
City Bucharest
Country Romania
Telephone +40 213129226
Fax +40 213129226
E-mail lilianagarna@yahoo.com
Website http://www.spcaroldavila.ro/index.php/activitati/registrul-renal-roman/
Chairman of National Society of Nephrology Liliana Ana Tuţă
Chairman of National Society E-mail tutaliliana@yahoo.com
Chairman of Registry Gabriel Mircescu
Chairman of Registry E-mail gmircescu@hotmail.com
Director of Registry Liliana Garneata
Director E-mail lilianagarna@yahoo.com
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 will soon become mandatory, so far, few data on quality of treatment are available.
Latest annual report Annual report 2016
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
Telephone +7 (499) 196 1951
Fax +7 (499) 196 1951
E-mail renalreg@mail.ru
Website http://www.nephro.ru
Chairman of National Society of Nephrology
(Russian Dialysis Society)
Anton Andrusev
Chairman of National Society E-mail a.andrusev@gmail.com
Chairman of Registry Anton Andrusev
Chairman of Registry E-mail a.andrusev@gmail.com
Director of Registry Natalya Tomilina
Director of Registry E-mail natomilina@yandex.ru
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

Individual data:
  • Name
  • Date of birth
  • Sex
  • Cause of CRF
  • Hepatitis B and C contamination
  • Comorbidities
  • EPO therapy

Individual data at the beginning of RRT and at the end of the year:
  • Blood pressure
  • Height
  • Weight
  • Creatinine
  • Urea
  • Haemoglobin
  • Albumin
  • Ca
  • P
  • PTH
  • D/P creat
  • Treatment outcomes
Latest annual report 2015 (published as complete report)
Paediatric data included Yes, Pediatric part is managed by Dr. Elena Molchanova ( molchanova_E_A@rdkb.ru)
   
Serbia
Acronym / abbreviation ARDTS
Street Pasterova 2
Postal code 11000
City Beograd
Country Serbia
Telephone +381 11 3617 127
Fax +381 11 3617 127
E-mail radomirnaumovic450@gmail.com
Website www.udruzenjenefrologa.com
Chairman of National Society of Nephrology Prof dr Radomir Naumovic
Chairman of National Society E-mail radomirnaumovic450@gmail.com
Chairman of Registry Prof dr Radomir Naumovic
Chairman of Registry E-mail radomirnaumovic450@gmail.com
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 2013
Paediatric data included Yes
   
Slovenia
Acronym / abbreviation SLO RRT Registry
Street Zaloska 7
Postal code 1000
City Ljubljana
Country Slovenia
Telephone + 386 1 522 31 12
Fax + 386 1 522 22 98
E-mail jadranka.buturovic@mf.uni-lj.si
Website www.nephro-slovenia.si
Chairman of National Society of Nephrology Assoc. Prof. Damjan Kovač, MD, PhD
Chairman of National Society E-mail damjan.kovac@guest.arnes.si
Chairman of Registry Prof. Jadranka Buturovic Ponikvar, MD, PhD
Chairman of Registry E-mail jadranka.buturovic@mf.uni-lj.si
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
Telephone +34 955 004 924
Fax +34 955 407 636
Chairman of Registry Pablo Castro de la Nuez
Chairman of Registry E-mail pablo.castro.sspa@juntadeandalucia.es
Director of Registry Manuel Alonso Gil
Director E-mail manuel.alonso.sspa@juntadeandalucia.es
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 2016
Paediatric data included Yes
   
Spain, Basque country
Acronym / abbreviation UNIPAR
Street Coordinación de Trasplantes
Osakidetza - Servicio Vasco de salud
Maria Diaz de Haro, Nº60-1 a planta.
Postal code 48010
City Bilbao
Region Basque country
Country Spain
Telephone (+34) 94 403 36 03
E-mail unipar@osakidetza.eus or amagaz@gac.com.es or gac@gacinvestigacion.com
Chairman of Registry Renal transplant Subcommittee
Chairman of Registry E-mail unipar@osakidetza.eus
Director of Registry Dr. J. Aranzabal, Dra. A. Magaz
Director E-mail JOSEIGNACIO.ARANZABALPEREZ@OSAKIDETZA.eus, amagaz@gac.com.es
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 2016/2016 Giltzurrun-Gaixoei buruzko txosten epidemiologikoa (From 1991, uninterrupted)
Paediatric data included Yes
Further information Please, contact us: amagaz@gac.com.es or unipar@osakidetza.eus
   
Spain, Cantabria
Street Hospital Valdecilla Avda de Valdecilla
Postal code 39008
City Santander
Region Cantabria
Country Spain
Telephone +34 942 202738
Fax +34 942 31 51 01
E-mail nefrologia@humv.es
Chairman of National Society of Nephrology Mª Dolores del Pino y Pino
Chairman of National Society E-mail mdpinoypino@gmail.com, presidenta@senefro.org
Chairman of Registry Eduardo Martín
Chairman of Registry E-mail emartine@msssi.es
Date of Establishment 1972
Latest annual report 2016
Paediatric data included No
   
Spain, Catalonia
Acronym / abbreviation RMRC
Street Edifici Dr. Frederic Duran i Jordâ. Passeig Taulat, 106-116
Postal code 08005
City Barcelona
Region Catalonia
Country Spain
Telephone (+34) 93 490 62 50
Fax (+34) 93 491 37 11
E-mail jcomas@catsalut.cat
Website http://trasplantaments.gencat.cat
Director of Registry Jaume Tort i Bardolet (Director of the OCATT)
Director E-mail jtort@catsalut.cat
Manager of the Registry Nephrologists comission
Technicians of the Registry Emma Arcos and Jordi Comas
Technicians of the Registry E-mail earcos@catsalut.cat, and jcomas@catsalut.cat
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 2016, 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
Telephone +34 961925775
Fax +34 961925780
E-mail ferrer_man@gva.es, alberich_car@gva.es
Website http://www.sp.san.gva.es
Chairman of National Society of Nephrology Dr. José Luiz Górriz Teruel
Chairman of National Society E-mail jlgorriz@senefro.org
Chairman of Registry Dra. Ana María García García
Chairman of Registry E-mail dgsp@gva.es
Director of Registry Dr. Carmen Alberich Martí
Director E-mail alberich_car@gva.es
Technician of the Registry Dr. Manuel Ferrer Alamar
RN Nieves Fuster Camarena
Technician of the Registry E-mail ferrer_man@gva.es
fuster_nie@gva.es
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 2016, on the website
Paediatric data included Yes
   
Sweden
Acronym / abbreviation SNR
Street SNR
Medicin exp
plan 5
Länssjukhuset Ryhov
Postal code SE-551 85
City Jönköping
Country Sweden
Telephone +46-36-321966
Fax +46-36-322088
E-mail snr@rjl.se
Website www.snronline.se
Chairman of Registry KG Prütz
Director of Registry Maria Stendahl
Director E-mail snr@rjl.se
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 onset
  • Pancreas- 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
    • Kt/V
    • Vascular access
    • Lab
    • Blood pressure
    • Etc
Latest annual report By request from the registry, also on website
Paediatric data included Yes
Further information Internet-based collection of data.
   
Switzerland
Street Tièchestrasse 99
Postal code CH-8037
City Zurich
Country Switzerland
Fax +41 44 366 20 76
E-mail patrice.ambuehl@waid.zuerich.ch
Chairman of National Society of Nephrology Prof. Pierre-Yves Martin, M.D.
Chairman of National Society E-mail pierre-yves.martin@hcuge.ch
Chairman of Registry Prof. Pierre-Yves Martin, M.D.
Chairman of Registry E-mail pierre-yves.martin@hcuge.ch
Director of Registry Prof. Patrice Max Ambühl, M.D.
Director E-mail patrice.ambuehl@waid.zuerich.ch
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
  • 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:
  • Year of 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
Telephone 216 71 561032
Fax 216 71 561838
E-mail chedli.mahjoubi@rns.tn
Chairman of National Society of Nephrology Pr Jamil Hachicha
Chairman of National Society E-mail jamil.hachicha@rns.tn
Chairman of Registry Dr Chedly Mahjooubi
Chairman of Registry E-mail chedli.mahjoubi@rns.tn
Director of Registry Dr Chedli Mahjoubi
Director E-mail chedli.mahjoubi@rns.tn
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
Telephone +90-212-2194882
E-mail gsuleymanlar@gmail.com, nseyahi@yahoo.com
Website http://www.tsn.org.tr/
Chairman of National Society of Nephrology Prof. Dr. Gültekin Süleymanlar
Chairman of National Society E-mail gsuleymanlar@gmail.com, gsuleymanlar@akdeniz.edu.tr
Chairman of Registry Prof. Dr. Gültekin Süleymanlar
Chairman of Registry E-mail gsuleymanlar@gmail.com, gsuleymanlar@akdeniz.edu.tr
Coordinator of Registry Prof. Dr. Nurhan Seyahi
Coordinator E-mail nseyahi@yahoo.com, nseyahi@istanbul.edu.tr
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 2016
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
Telephone +38 044 2259377
Fax +38 044 2259387
E-mail director@inephrology.kiev.ua
Website inephrology.kiev.ua
Chairman of National Society of Nephrology Mykola Kolesnyk, MD, PhD
Chairman of National Society E-mail director@inephrology.kiev.ua
Chairman of Registry Mykola Kolesnyk, MD, PhD
Chairman of Registry E-mail director@inephrology.kiev.ua
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 2008 provided to ERA-EDTA
The latest annual report was published in 2010 with data until 31 December 2009
Paediatric data included No
   
United Kingdom, England/Wales/Northern Ireland
Acronym / abbreviation UKRR
Street Learning and Research Centre Southmead Hospital Southmead Rd
Postal code BS10 5NB
City Bristol
Region England/Wales/Northern Ireland
Country United Kingdom
Telephone +44 117 414 8150
E-mail renalregistry@renalregistry.nhs.uk
Website http://www.renalreg.org
President of National Society of Nephrology Dr Graham Lipkin
President of National Society E-mail graham.lipkin@uhb.nhs.uk
Medical Director of Registry Dr Fergus Caskey
Medical Director of Registry E-mail mdfjc@bris.ac.uk
Director of Registry Ron Cullen
Director E-mail ron.cullen@renalregistry.nhs.uk
Date of Establishment 1997
The data collected Electronic data downloaded quarterly.
Basic demographics:
  • diagnosis
  • all modality changes
  • co-morbidity at start of renal replacement therapy
  • quarterly biochemical data on quality of care including:
    • haemoglobin
    • ferritin
    • epo prescribing
    • dialysis adequacy
    • blood pressure
    • cholesterol
    • hepatitis serology
    • glycosylated haemoglobin
    • bone metabolism (calcium, phosphate, PTH)
    • vascular access
  • Data collected on transplant patients as well
  • Some items collected pre-RRT
Latest annual report 2017, on the website
Paediatric data included Yes
Further information
   
United Kingdom, Scotland
Acronym / abbreviation SRR
Street Meridian Court, 5 Cadogan Street
Postal code G2 6QE
City Glasgow
Region Scotland
Country United Kingdom
Telephone (+44) (0) 141 282 2220
E-mail NSS.isdsrr@nhs.net
Website http://www.srr.scot.nhs.uk/
Chairman of National Society of Nephrology Dr David Walbaum
Chairman of National Society E-mail david.walbaum@nhs.net
Chairman of Registry Dr Bruce MacKinnon
Chairman of Registry E-mail Bruce.mackinnon2@ggc.scot.nhs.uk
Director of Registry Dr Jamie Traynor
Director E-mail jamie.traynor@nhs.net
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
    • Pre dialysis for haemodialysis patients
  • Note of patients declining
  • medical advice
    • Notify SRR Office
  • Blood transfusion
  • 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 2015, on the website
Paediatric data included Yes
Further information Publications concerning audit, quality assurance, needs assessment and service planning involving the SRR: