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Information national/regional registries
On this page national and regional registries can present their contact details and provide information on their work.
- Belgium, Dutch-speaking
- Bosnia-Herzegovina
- Croatia
- Denmark
- Estonia
- Finland
- FYR of Macedonia
- Germany
- Greece
- Italy
- Latvia
- Norway
- Portugal
- Romania
- Russia
- Serbia
- Slovenia
- Spain, Andalusia
- Spain, Basque country
- Spain, C.Valenciana
- Spain, Cantabria
- Spain, Catalonia
- Sweden
- Tunisia
- Turkey
- United Kingdom, England/Wales/Northern Ireland
- United Kingdom, Scotland
| 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 |
| 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 | |
| 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 |
| 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. |
| 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 |
| 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 |
| 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 |
| 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 | |
| Estonia | |
|---|---|
| Street | 6 Puusepa Str. |
| Postal code | 51014 |
| City | Tartu |
| Region | |
| Country | Estonia |
| Telephone | +372 7 318 276 |
| Fax | +372 7 318 276 |
| 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 |
|
| 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 | |
| Finland | |
|---|---|
| Street | Pohjoinen Hesperiankatu 5 A 1 |
| Postal code | FIN-02730 |
| City | Helsinki |
| Region | |
| Country | Finland |
| Telephone | |
| Fax | |
| 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 |
| 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 |
| 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. |
| 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 |
| 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 |
| Greece | |
|---|---|
| Street | General Hospital of Athens "G.Gennimatas" - YSE - 154 Messogion Ave |
| Postal code | 11527 |
| City | Athens |
| Region | |
| Country | Greece |
| Telephone | +302107774777 |
| Fax | +302107777740 |
| 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. |
| 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 |
| 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 | |
| Latvia | |
|---|---|
| Street | Nephrological Dpt., Pilsonu 13 |
| Postal code | LV-1002 |
| City | Riga |
| Region | |
| Country | Latvia |
| Telephone | +371615063 |
| Fax | +371614168 |
| 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 | |
| Norway | |
|---|---|
| Street | IMMI, Rikshospitalet University Hospital |
| Postal code | N-0027 |
| City | Oslo |
| Region | |
| Country | Norway |
| Telephone | +47 23071378 (+47 23073500) |
| Fax | +47 23073510 |
| 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 | |
| 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 |
| 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 | |
| Romania | |
|---|---|
| Street | 4 Calea Grivitei |
| Postal code | 010731 |
| City | Bucharest |
| Region | |
| Country | Romania |
| Telephone | +40 213129226 |
| Fax | +40 213129226 |
| 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 | |
| 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 |
| 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 | |
| Serbia | |
|---|---|
| Street | Pasterova 2 |
| Postal code | 11 000 |
| City | Beograd |
| Region | |
| Country | Serbia |
| Telephone | +381 11 3617 127 |
| Fax | +381 11 3617 127 |
| 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. |
| Slovenia | |
|---|---|
| Street | Zaloska 7 |
| Postal code | 1000 |
| City | Ljubljana |
| Region | |
| Country | Slovenia |
| Telephone | + 386 1 522 31 12 |
| Fax | + 386 1 522 2298 |
| 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 | |
| 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 |
| 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 | |
| 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 |
| 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 |
| 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 |
| 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 | |
| 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 |
| 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 | |
| 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 |
| 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 | |
| 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 |
| 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. |
| 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 |
| 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 | |
| Turkey | |
|---|---|
| Street | Valikonagi Cd. Sakayik Sok. Polat Apt. 63/1 Nisantas |
| Postal code | 34365 |
| City | Istanbul |
| Region | |
| Country | Turkey |
| Telephone | +90-212-2194882 |
| Fax | |
| 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 |
| 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 |
| 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 |
| 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 |
| 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 |
|
| Latest annual report | 2002 - 2004 |
| Paediatric data included | Yes |
| Further information | Publications concerning audit, quality assurance, needs assessment and service planning involving the SRR:
|