Information on national/regional registries
  1. Belgium, Dutch-speaking
  2. Bosnia-Herzegovina
  3. Croatia
  4. Denmark
  5. Estonia
  6. Finland
  7. FYR of Macedonia
  8. Germany
  9. Greece
  10. Italy
  11. Latvia
  12. Norway
  13. Portugal
  14. Romania
  15. Russia
  16. Serbia
  17. Slovenia
  18. Spain, Andalusia
  19. Spain, Basque country
  20. Spain, C.Valenciana
  21. Spain, Cantabria
  22. Spain, Catalonia
  23. Sweden
  24. Tunisia
  25. Turkey
  26. United Kingdom, England/Wales/Northern Ireland
  27. United Kingdom, Scotland

1. Belgium, Dutch-speaking
Street: c/o UZA, 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
Acronym / abbreviation: NBVN
Chairman of National Society of Nephrology: Dr. J.M. Billiouw
Chairman of National Society E-mail: jm@billiouw.net
Chairman of Registry: Dr. Johan De Meester
Chairman of Registry E-mail: Johan.De.Meester@olvz-aalst.be
Director of Registry: Hans Augustijn
Director E-mail: secretariaat@nbvn.be
Date of Establishment: 1994
The data collected: Name
First name
Date of birth
Gender
Native country
Place of birth
Place of residence
Renal diagnosis
Renal biopsy
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
Registration on transplant waiting list
Reason for non-registration on the transplant waiting list
Date of registration on the transplant waiting list
Registration level
Date deletion from list
Date 1st consult with nephrologist before start of renal replacement therapy
Physician who referred the patient to a nephrologist
Physician who regularly saw the patient
Type of renal failure (chronic/chronic with acute phase)
Did follow up take place or not ?
Heart failure
Angina Pectoris
Myocardial infarction, PTCA, CABG, Arrhythmia
CVA
Peripheral vascular disease
Neoplasia
Chronic obstructive lung disease
Diabetes Mellitus, neurological and ophthalmic
Dementia
Gastrointestinal disease
Hepatobiliary disease
Systemic disease
HIV, Aids
Nutrition
Latest annual report: The latest annual report is from 2003 and is available on request at secretariaat@nbvn.be and will be placed on our new future website.
Paediatric data included: Until 2000
Whereabouts of paediatric data: Paediatric Renal Registry (Belgian Paediatric Nephrology)
Further information:
   
2. Bosnia-Herzegovina
Street: Clinical Center University of Sarajevo,
Bolnicka 25
Postal code: 71000
City: Sarajevo
Region:
Country: Bosnia-Herzegovina
Telephone: +387 33 269 071
Fax: +387 33 269 071
E-mail: kcushemodijaliza@bih.net.ba
Website: http://www.undt.ba
Acronym / abbreviation:
Chairman of National Society of Nephrology: Senaid Trnacevic, MD, PhD
Chairman of National Society E-mail:
Chairman of Registry: Halima Resic, MD, PhD
Chairman of Registry E-mail: kcushemodijaliza@bih.net.ba
Director of Registry: Halima Resic, MD, PhD
Director E-mail: kcushemodijaliza@bih.net.ba
Date of Establishment: September 2000
The data collected: For incident and prevalent RRT patients:
- Date of birth and gender;
- Date of start of RRT and primary renal disease;
- Type of treatment (HD, PD, transplantation);
- Treatment with EPO;
- Blood transfuseable disease (Hepatitis C, B, HIV);
- Date and cause of death.
Latest annual report: Will be available in Nephrology Dialysis Transplantation (report for 2001)
Paediatric data included: No
Further information: We plan to evaluate the prevalence and incidence of the Hepatitis C in Bosnia-Herzegovina in the last two years.
   
3. Croatia
Street: "sestre milosrdnice" clin hosp
Vinogradska c. 29
Postal code: 10000
City: Zagreb
Region:
Country: Croatia
Telephone: +38 5 1 37 87 648
Fax: +38 5 1 37 69 067
E-mail: hrnbf@hdndt.org
Website: http://www.hdndt.org/registarnbf.htm
Acronym / abbreviation:
Chairman of National Society of Nephrology: Prof Petar Kes
Chairman of National Society E-mail: kespetar@net.hr
Chairman of Registry: Doc Svjetlana Čala
Chairman of Registry E-mail: svjetlana.cala@bol-svduh-t-com.hr
Director of Registry:
Director E-mail:
Date of Establishment: 15-05-2001
The data collected: 1. Data for identification, date of birth, gender
2. Date of start of RRT, primary renal disease, comorbid conditions at start
3. Height, weight and comorbid conditions at the end of reported year
4. Type of treatment changes (HD, PD, transplantation)
5. Place (center) of treatment (coming from another centre, transfer to another centre)
6. Date and cause of death
Latest annual report: 2004, on the website
Paediatric data included: Yes
Further information: Special areas of interest:
· diabetic nephropathy
· endemic nephropathy
· glomerulonephritis
   
4. Denmark
Street: Copenhagen University Hospital at Herlev
Department of Nephrology B
Postal code: 2730
City: Herlev
Region:
Country: Denmark
Telephone: +45 44 88 44 88
Fax: +45 44 88 46 15
E-mail: jamhea01@heh.regionh.dk
Website: http://www.nephrology.dk
Acronym / abbreviation:
Chairman of National Society of Nephrology: Anne-Lise Kamper
Chairman of National Society E-mail: anne-lise.kamper@rh.regionh.dk
Chairman of Registry: Anne-Lise Kamper
Chairman of Registry E-mail: anne-lise.kamper@rh.regionh.dk
Director of Registry: James Heaf
Director E-mail: jamhea01@heh.regionh.dk
Date of Establishment: 1990
The data collected:
Latest annual report: 2005
Paediatric data included: Yes
Further information:
   
5. Estonia
Street: 6 Puusepa Str.
Postal code: 51014
City: Tartu
Region:
Country: Estonia
Telephone: +372 7 318 276
Fax: +372 7 318 276
E-mail: mai.ots@kliinikum.ee
Website:
Acronym / abbreviation:
Chairman of National Society of Nephrology: Dr. Madis Ilmoja
Chairman of National Society E-mail: madis.ilmoja@kliinikum.ee
Chairman of Registry:
Chairman of Registry E-mail:
Director of Registry:
Director E-mail:
Date of Establishment:
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: Epidemiology data have been published in the journal Estonian Physician in May 2003 and in October 2005.
Paediatric data included: Yes
Further information:
   
6. Finland
Street: Pohjoinen Hesperiankatu 5 A 1
Postal code: FIN-02730
City: Helsinki
Region:
Country: Finland
Telephone:
Fax:
E-mail: rauni.jukkara@musili.fi
Website: http://www.musili.fi/smtr/english
Acronym / abbreviation:
Chairman of National Society of Nephrology: Risto Ikäheimo
Chairman of National Society E-mail: risto.ikaheimo@ppshp.fi
Chairman of Registry: Carola Grönhagen-Riska
Chairman of Registry E-mail: carola.gronhagen-riska@hus.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 2006 with data until 31 December 2005.
Paediatric data included: Yes
Further information: Annual Report available at www.musili.fi/smtr/english
   
7. FYR of Macedonia
Street: Department of Nephrology, clinical center
Vodnjanska 17
Postal code: 1000
City: Skopje
Region:
Country: FYR of Macedonia
Telephone: +389 2 3147 277
Fax: +389 2 3226 796
E-mail: olist@freemail.org.mk
Website:
Acronym / abbreviation:
Chairman of National Society of Nephrology: Prof. Aleksandar Sikole
Chairman of National Society E-mail: asikole@feemail.com.mk
Chairman of Registry: Olivera Stojceva-Taneva, M.D.Ph.D.
Chairman of Registry E-mail: olist@freemail.com.mk
Director of Registry: Olivera Stojceva-Taneva, M.D.Ph.D.
Director E-mail: olist@freemail.com.mk
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.
Latest annual report: 2005
Paediatric data included: Yes
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 are going to be presented during the 8th BANTAO Congress in Belgrade 2007. There is an ongoing project (a population-based study) on the prevalence of stages of CKD in the general population in FYR of Macedonia.
   
8. Germany
Street: Joachimstaler Straße 15
Postal code: 10719
City: Berlin
Region:
Country: Germany
Telephone: (+49) (030) 311 86 100
Fax: (+49) (030) 311 86 111
E-mail: quasi@quasi-niere.de
Website: http://www.quasi-niere.de
Acronym / abbreviation: QuaSi Niere
Chairman of National Society of Nephrology: Prof. R. Brunkhorst
Chairman of National Society E-mail: sekretariat.brunkhorst.oststadt@klinikum-hannover.de
Chairman of Registry: Prof. U. Frei
Chairman of Registry E-mail: ulrich.frei@charite.de
Director of Registry: H.-J. Schober-Halstenberg
Director E-mail: quasi@quasi-niere.de
Date of Establishment: May 1994
The data collected: number and distribution of units
number and distribution of stations
number and distribution of prevalent patients
number and distribution of patients starting RRT
age
gender
primary renal diagnosis
treatment modality
cause of death
Latest annual report: Renal Replacement therapy in Germany 2005/2006
Paediatric data included: Yes
Further information: continuous "up-to-dates" on the website www.quasi-niere.de
   
9. Greece
Street: General Hospital of Athens "G.Gennimatas" - YSE - 154 Messogion Ave
Postal code: 11527
City: Athens
Region:
Country: Greece
Telephone: +302107774777
Fax: +302107777740
E-mail: ysegioan@otenet.gr
Website:
Acronym / abbreviation:
Chairman of National Society of Nephrology: John N. Boletis
Chairman of National Society E-mail: laikneph@laiko.gr
Chairman of Registry: G.A. Ioannidis
Chairman of Registry E-mail: ysegioan@otenet.gr
Director of Registry: G.A. Ioannidis
Director E-mail: ysegioan@otenet.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).
Latest annual report: Oral presentation at the Panhellenic Congress of Nephrology or at the scientific meeting of the Hellenic Society of Nephrology, every year since 2000. Publication, in Greek, in the Journal "Hellenic Nephrology" (official publication of the Hellenic Society of Nephrology). On request from the registry.
Paediatric data included: Yes
Further information: The Hellenic Renal Registry, supported by the Hellenic Society of Nephrology, 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, a state body attached to the Ministry of Health, which keeps the records of RRT patients from 1986. As to our forward actions, we plan an extension of the data set which are being collected currently.
   
10. Italy
Street: c/o Segreteria Società Italiana di Nefrologia
Viale dell´Università, 11
Postal code: 00185
City: Roma
Region:
Country: Italy
Telephone: +39 06 4465270
Fax: +39 06 49270220
E-mail: nefrologia@sin-italy.org
Website: http://www.sin-ridt.org
Acronym / abbreviation:
Chairman of National Society of Nephrology: Prof. Carmine Zoccali
Chairman of National Society E-mail: carmine.zoccali@tin.it
Chairman of Registry: Dott. Aurelio Limido
Chairman of Registry E-mail: alimido@tin.it
Director of Registry: Dott. Mario Salomone
Director E-mail: mariosalom@inwind.it
Date of Establishment: 1996
The data collected: - from 1998 to 2002 by aggregated data
- from 2003 by patient data
Latest annual report: 2004, available on the website http://www.sin-ridt.org/sin-ridt.org.htm
Paediatric data included: No
Whereabouts of paediatric data: Paediatric Registry
Director: Dott. Enrico Verrina
E-Mail: enricoverrina@ospedale-gaslini.ge.it
Further information:
   
11. Latvia
Street: Nephrological Dpt., Pilsonu 13
Postal code: LV-1002
City: Riga
Region:
Country: Latvia
Telephone: +371615063
Fax: +371614168
E-mail: lnsr@latnet.lv
Website:
Acronym / abbreviation:
Chairman of National Society of Nephrology: Professor Inese Mihailova
Chairman of National Society E-mail: lnsr@latnet.lv
Chairman of Registry: Harijs Cernevskis
Chairman of Registry E-mail: lnsr@latnet.lv
Director of Registry:
Director E-mail:
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, blood pressure, hemoglobin, creatinin and albumin level, weight, BMI, smoking,
Prevalence of RRT patients, by treatment modality, age, gender, primary diagnosis
Mortality rate, causes of death, date of death
Flow of patients between hemodialysis, peritoneal dialysis and kidney transplantation
Latest annual report:
Paediatric data included: Yes
Further information:
   
12. Norway
Street: IMMI, Rikshospitalet University Hospital
Postal code: N-0027
City: Oslo
Region:
Country: Norway
Telephone: +47 23071378 (+47 23073500)
Fax: +47 23073510
E-mail: torbjorn.leivestad@rikshospitalet.no
Website: http://www.nephro.no
Acronym / abbreviation:
Chairman of National Society of Nephrology: Dr Harald Bergrem
Chairman of National Society E-mail: beha@sir.no
Chairman of Registry: Dr Torbjørn Leivestad
Chairman of Registry E-mail: torbjorn.leivestad@rikshospitalet.no
Director of Registry: Dr Torbjørn Leivestad
Director E-mail: torbjorn.leivestad@rikshospitalet.no
Date of Establishment: 1994
The data collected: The registry collects data on all patients receiving RRT for chronic renal failure in Norway.
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: 2006, on the website
Paediatric data included: Yes
Further information:
   
13. Portugal
Street: Largo do Campo Pequeno, nº2 - 2º A
Postal code: 1000-078
City: Lisboa
Region:
Country: Portugal
Telephone: (+351) 217 970 187
Fax: (+351) 217 941 142
E-mail: geral@spnefro.pt
Website: http://www.spnefro.pt
Acronym / abbreviation:
Chairman of National Society of Nephrology: Dr José Vinhas
Chairman of National Society E-mail: j.vinhas@mail.telepac.pt
Chairman of Registry: Dr João Pinto dos Santos
Chairman of Registry E-mail: joao.pds@mail.telepac.pt
Director of Registry:
Director E-mail:
Date of Establishment: This new registry (the former was lost) established 1997
The data collected: Aggregated data from 1997
Latest annual report: 2006
Paediatric data included: Yes
Further information:
   
14. Romania
Street: 4 Calea Grivitei
Postal code: 010731
City: Bucharest
Region:
Country: Romania
Telephone: +40 213129226
Fax: +40 213129226
E-mail: cdavilla@rdsnet.ro or lilianagarna@yahoo.com
Website:
Acronym / abbreviation: RRR
Chairman of National Society of Nephrology: Adrian Constantin Covic
Chairman of National Society E-mail: acovic@xnet.ro
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 2004.
From 2005 onwards 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 other renal registries.
Latest annual report: for 2005
Paediatric data included: Yes
Further information:
   
15. Russia
Street: Prof. N.A. Tomilina, Russian Dialysis Society
Moscow city nephrology center, City hospital no 52
Pechotnaya str., 3
Postal code: 123182
City: Moscow
Region:
Country: Russia
Telephone: +7 (095) 196 1951
Fax: +7 (095) 196 1951
E-mail: renalreg@mail.ru
Website: http://www.dialysis.ru
Acronym / abbreviation:
Chairman of National Society of Nephrology: Ermolenko Valentine
Chairman of National Society E-mail:
Chairman of Registry: Tomilina Natalia
Chairman of Registry E-mail: natomil@online.ru
Director of Registry: Bikbov Boris
Director E-mail: renalreg@mail.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 contamination
comorbidities
EPO therapy
patient condition at the beginning of RRT and at the end of the year:
blood pressure
height
weight
creatinine
urea
haemoglobin
albumin
treatment outcomes
Latest annual report: 2003
Paediatric data included: Yes
Further information:
   
16. Serbia
Street: Pasterova 2
Postal code: 11 000
City: Beograd
Region:
Country: Serbia
Telephone: +381 11 3617 127
Fax: +381 11 3617 127
E-mail: milan.r@eunet.yu
Website:
Acronym / abbreviation:
Chairman of National Society of Nephrology: Prof. Slobodan Èurić, MD, PhD
Chairman of National Society E-mail: nefroim@eunet.yu
Chairman of Registry: Assisst. Prof. Milan Radović, MD, PhD
Chairman of Registry E-mail: milan.r@eunet.yu
Director of Registry: Prof. Vidosava Nesić, MD, PhD
Director E-mail: vidanesic@yahoo.com
Date of Establishment: 1997
The data collected: Since 2003 - Individual patient's data collected by specially designed software (version 1.0):
Name, date of birth, age (years), gender, renal replacement therapy vintage (months), address, ID number, Centers code number, RRT center name, code and address, phone number, Diagnosis 1 (cause of renal failure) [ERA codes], treatment beginning (date), end of treatment (date), previous renal replacement treatment mode, HBV, HCV, HIV status, erythropoetin therapy, renal replacement type (hemodialysis, hemodiafiltration, hemofiltration, home dialysis treatments, CAPD, APD, kidney transplantation), donor source, cause of death (diagnosis) [ERA codes], Notes (comorbidites), Kt/V and URR (optional).
Centers data:
Address, Head of the Unit, phone, e-mail address.
Epidemiology data:
Incidence of RRT patients, incidence of established therapy, prevalence of RRT patients, causes of end stage renal failure, causes of death, mortality rate, prevalence of hepatitis B, C and HIV positive pts, duration of RRT treatment, linear and exponential mortality and incidence rates.
Latest annual report: Annual Report for 2002, 2003 in press
Paediatric data included: Yes
Further information: Data on RRT in the period from 1997 to 2000 have been presented at the 1st World Congress of Nephrology, San Francisco, 2001 and published in Int J Artif Organs 2002; 25:852-9.
Data quality assessment multicentric study (14 centers, 1300 prevalent patients) after switch from aggregate (2002) on individual data collection (2003- 2004) will be presented orally on BANTAO congress, September 8-11th 2005.
   
17. Slovenia
Street: Zaloska 7
Postal code: 1000
City: Ljubljana
Region:
Country: Slovenia
Telephone: + 386 1 522 31 12
Fax: + 386 1 522 2298
E-mail: jadranka.buturovic@mf.uni-lj.si
Website: www.nephro-slovenia.si
Acronym / abbreviation: SLO RRT Registry
Chairman of National Society of Nephrology: Prof. dr. Rafael Ponikvar, MD, PhD
Chairman of National Society E-mail: rafael.ponikvar@kclj.si
Chairman of Registry: Prof. dr. Jadranka Buturovic Ponikvar, MD, PhD
Chairman of Registry E-mail: jadranka.buturovic@mf.uni-lj.si
Director of Registry:
Director E-mail:
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

For ALL DIALYSIS patients:
The information about being included on the waiting list for cadaveric kidney transplantation
If not included, why:
a) medical contraindication
b) refusal
c) in preparation
d) age
e) 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
Latest annual report: 2005, available on the website www.nephro-slovenia.si/register2005.pdf
Paediatric data included: Yes
Further information:
   
18. Spain, Andalusia
Street: Avda de la Constitución, 18
Postal code: 41071
City: Sevilla
Region: Andalusia
Country: Spain
Telephone: +34 955.01.82.75
Fax: +34 955.01.83.33
E-mail: pablo.castro.sspa@juntadeandalucia.es
Website:
Acronym / abbreviation:
Chairman of National Society of Nephrology:
Chairman of National Society E-mail:
Chairman of Registry:
Chairman of Registry E-mail:
Director of Registry: Pablo Castro de la Nuez
Director E-mail: pablo.castro.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
number of HD sessions per week
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: 2000
Paediatric data included: Yes
Further information:
   
19. Spain, Basque country
Street: Gran Vía, 62-4ª planta
Postal code: 48011
City: Bilbao
Region: Basque country
Country: Spain
Telephone: (+34) 94 400 73 33
Fax: (+34) 94 400 73 71
E-mail: unipar@osakidetza.net or amagaz@gac.com.es
Website:
Acronym / abbreviation: UNIPAR
Chairman of National Society of Nephrology:
Chairman of National Society E-mail:
Chairman of Registry: Dra. M. Gonzalez
Chairman of Registry E-mail: unipar@osakidetza.net
Director of Registry: Dr. J. Aranzabal, Dra. A. Magaz
Director E-mail: joseignacio.aranzabalperez@osakidetza.net, amagaz@gac.com.es
Date of Establishment: 1991
The data collected: - Social and identification data (name, gender, date of birth, family structure, education, address, phone);
- Primary Renal Disease;
- Co-morbid conditions;
- Serology data (Hepatitis B and C, HIV);
- Treatment data (date, type, cause);
- Transplant data (date, type, immunosuppressant drugs);
- Haemodialysis data;
- Transplant waiting list data;
- Mortality data (date, cause, treatment at the moment of death).
Latest annual report: Informe Epidemiológico Pacientes Renales 2006/2006 Giltzurrun-Gaixoei buruzko txosten epidemiologikoa (From 1991, uninterrupted)
Paediatric data included: Yes
Further information: Please, contact us: amagaz@gac.com.es or unipar@osakidetza.net
   
20. Spain, C.Valenciana
Street: C/Micer Mascó, 31-33
Postal code: 46010
City: Valencia
Region: C.Valenciana
Country: Spain
Telephone: +34 963869237
Fax: +34 963869210
E-mail: zurriaga_osc@gva.es
Website: http://www.sp.san.gva.es/epidemiologia/
Acronym / abbreviation: REMRENAL
Chairman of National Society of Nephrology: Dr. Carlos del Pozo
Chairman of National Society E-mail:
Chairman of Registry: Dr. Manuel Escolano
Chairman of Registry E-mail:
Director of Registry: Dr. Óscar Zurriaga
Director E-mail: zurriaga_osc@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: 2006, on the web site
Paediatric data included: Yes
Further information:
   
21. Spain, Cantabria
Street: Hospital Valdecilla Avda de Valdecilla
Postal code: 39008
City: Santander
Region: Cantabria
Country: Spain
Telephone: +34 942 202738
Fax: +34 942 320415
E-mail: martinal@unican.es
Website:
Acronym / abbreviation:
Chairman of National Society of Nephrology: Angel LM de Francisco
Chairman of National Society E-mail: martinal@unican.es
Chairman of Registry: Fernando García
Chairman of Registry E-mail: fjgarcia@medynet.com
Director of Registry:
Director E-mail:
Date of Establishment: 1972
The data collected:
Latest annual report: 2004
Paediatric data included: No
Further information:
   
22. Spain, Catalonia
Street: Mejia Lequerica, 1. Edifici Hèlios 3, 1a planta
Postal code: 08028
City: Barcelona
Region: Catalonia
Country: Spain
Telephone: (+34) 93 490 62 50
Fax: (+34) 93 491 31 11
E-mail: jcomas@catsalut.net
Website: http://www.ocatt.net
Acronym / abbreviation: RMRC
Chairman of National Society of Nephrology:
Chairman of National Society E-mail:
Chairman of Registry:
Chairman of Registry E-mail:
Director of Registry: Director of the Registry:
- Roser Deulofeu (Director of the OCATT)
Manager of the Registry:
- Nephrologists comission
Technicians of the Registry:
- Emma Arcos
- Jordi Comas
- Jorge Twose
Director E-mail: rdeulofeu@catsalut.net, earcos@catsalut.net, jcomas@catsalut.net, jtwose@catsalut.net
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,...)
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...)
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 2004, including an English version, available on the website of Organització Catalana de Trasplantaments (www.ocatt.net)
Paediatric data included: Yes
Further information:
   
23. Sweden
Street: SNR
Medicin exp
plan 5
Länssjukhuset Ryhov
Postal code: SE-551 85
City: Jönköping
Region:
Country: Sweden
Telephone: +46-36-321966
Fax: +46-36-322088
E-mail: snr@lj.se
Website: www.snronline.se
Acronym / abbreviation: SNR
Chairman of National Society of Nephrology:
Chairman of National Society E-mail:
Chairman of Registry: Bengt Rippe
Chairman of Registry E-mail:
Director of Registry: Staffan Schön
Director E-mail: snr@lj.se
Date of Establishment: 1991 - 2007
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
   * Lab
   * Blood pressure
   * Etc
Latest annual report: By request from the registry
Paediatric data included: Yes
Further information: Internet-based collection of data.
   
24. Tunisia
Street: Ministry of Public Health
Place Bab Saadoun
Postal code: 1006
City: Tunis
Region:
Country: Tunisia
Telephone: 216 71 561032
Fax: 216 71 561838
E-mail: noureddine.cherni@rns.tn
Website:
Acronym / abbreviation:
Chairman of National Society of Nephrology: Pr Adel Khedher
Chairman of National Society E-mail: adel.khedher@rns.tn
Chairman of Registry: Dr Noureddine Cherni
Chairman of Registry E-mail: noureddine.cherni@rns.tn
Director of Registry: Mr Hichem Trimech
Director E-mail: hichem.trimech@rns.tn
Date of Establishment: 1990
The data collected: 1991
Latest annual report: 2004
Paediatric data included: Yes
Further information:
   
25. Turkey
Street: Valikonagi Cd. Sakayik Sok. Polat Apt. 63/1 Nisantas
Postal code: 34365
City: Istanbul
Region:
Country: Turkey
Telephone: +90-212-2194882
Fax:
E-mail: gulteksu@superonline.com or kserden@superonline.com
Website: http://www.tsn.org.tr/default_en.asp
Acronym / abbreviation: TSNNR
Chairman of National Society of Nephrology: Prof. Dr. Kamil Serdengecti
Chairman of National Society E-mail: kserden@superonline.com
Chairman of Registry: Prof. Dr. Ekrem Erek
Chairman of Registry E-mail:
Director of Registry: Prof. Dr. Gultekin Suleymanlar
Director E-mail: gulteksu@superonline.com
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: 2005
Paediatric data included: Yes
Further information: Registry reports in English can be downloaded from the website
   
26. United Kingdom, England/Wales/Northern Ireland
Street: Southmead Hospital
Southmead Rd
Postal code: BS10 5NB
City: Bristol
Region: England/Wales/Northern Ireland
Country: United Kingdom
Telephone: +44 117 959 5665
Fax: +44 117 959 5664
E-mail: renalreg@renalreg.com
Website: http://www.renalreg.org
Acronym / abbreviation: UKRR
Chairman of National Society of Nephrology: Prof P Mathieson
Chairman of National Society E-mail: P.Mathieson@bristol.ac.uk
Chairman of Registry: Dr C Tomson
Chairman of Registry E-mail: Charlie.Tomson@nbt.nhs.uk
Director of Registry: Dr D Ansell
Director E-mail: ansell@renalreg.com
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: www.renalreg.org 2006
Paediatric data included: Yes
Further information: - UK Chronic Kidney Disease guidelines:
http://www.renal.org/eGFR/eguide.html

- UK Renal Standards Document:
http://www.renal.org/Standards/standards.html

- UK eGFR reporting advice / leaflets:
http://www.renal.org/eGFR/resources/index.html
   
27. United Kingdom, Scotland
Street: Walton Building, Glasgow Royal Infirmary
Postal code: G4 0SF
City: Glasgow
Region: Scotland
Country: United Kingdom
Telephone: (+44) (0) 141 211 5171
Fax: (+44) (0) 141 211 4843
E-mail: srras@compuserve.com
Website: http://www.srr.scot.nhs.uk/
Acronym / abbreviation: SRR
Chairman of National Society of Nephrology: Dr David Jenkins
Chairman of National Society E-mail: David.Jenkins@faht.scot.nhs.uk
Chairman of Registry: Dr Keith Simpson
Chairman of Registry E-mail: keith.simpson@nhs.net
Director of Registry: Dr Keith Simpson
Director E-mail: keith.simpson@nhs.net
Date of Establishment: 1991
The data collected:
  1. Surname, Forenames
  2. Date of Birth
  3. Sex
  4. Ethnic Group
  5. Address
  6. Postcode
  7. Health Board of residence
  8. Deprivation score
  9. Hospital Number for all hospitals attended as a renal patient
  10. Primary Renal Diagnosis - ERA-EDTA codes
  11. Cause of Death - ERA-EDTA Codes
  12. Dialysis and transplantation events
  13. Report all changes in methods or place of
  14. renal replacement therapy with date
  15. Weight
  16. Dialysis Adequacy
    1. (a) Haemodialysis
    2. (b) Peritoneal Dialysis
  17. Adjusted serum calcium concentration
  18. Serum phosphate concentration
  19. Serum albumin concentration
  20. Haemoglobin concentration
  21. Serum ferritin concentration
  22. Erythropoietic Drugs - Dose, route and frequency
  23. Iron - Dose
  24. Peritonitis episodes for PD Patients
  25. Serum Potassium - Pre dialysis for haemodialysis patients
  26. Note of patients declining
  27. medical advice - Notify SRR Office
  28. Blood transfusion
  29. Availability of suitable permanent access for first RRT
  30. The CHI (Community Health Index)
    1. This is a unique Scottish National Health Service Patient Identification number.
  31. Date patient was first referred to a Nephrologist
  32. Date patient joined transplant (waiting) list
  33. Serum creatinine before 1st RRT for established renal failure
Latest annual report: 2002 - 2004
Paediatric data included: Yes
Further information: Publications concerning audit, quality assurance, needs assessment and service planning involving the SRR:
  1. 1) Cross party Group on Kidney Disease
    Renal Disease in Scotland: A strategy for future management
    April 2004
  2. 2) NHS Quality Improvement Scotland
    National Overview: Adult Renal Services
    March 2003
  3. 3) The SRR
    Other reports and publications
   

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