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| Nephroquest |
Associated Partners |
ERA-EDTA (United Kingdom)
Academisch Medisch Centrum (The Netherlands)
Agence de la biomédecine (France)
Ceská Nefrologická Spolecnost (Czech Republic)
Consiglio Nazionale delle Ricerche - Istituto di Biomedicina (CNR-IBIM) (Italy)
Groupement des Néphrologues Francophones de Belgique (Belgium)
Klinicni Center Ljubljana (Slovenia)
Nederlandstalige Belgische Vereniging voor Nefrologie (Belgium)
Renal Association, UK Renal Registry (United Kingdom)
RENINE (The Netherlands)
Spitalul Clinic de Nefrologie “Dr Carol Davila” (Romania)
Szpital Kliniczny Nr 1 Akademickie Centrum Kliniczne AMG (Poland)
Tartu Ülikool (Estonia)
Türk Nefroloji Denerği (Turkey)
Universität zu Köln - QiN (Germany) |
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| Nephroquest |
Collaborating partners |
Eesti Nefroloogide Selts (Estonia)
Fresenius Medical Care Deutschland (Germany)
Hans Mak Instituut (The Netherlands)
Ministry of Health and Welfare, General Hospital of Athens (Greece)
Nederlandse Federatie voor Nefrologie (The Netherlands)
Società Italiana di Nefrologia (Italy)
Societatea Romana de Nefrologie (Romania)
Société Suisse de Néphrologie (Switzerland)
Stichting Nationaal ICT Instituut in de Zorg (The Netherlands)
Suomen munuaistautirekisteri (Finland)
Svensk Njurmedicinsk Förening (Sweden) |
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Contact details |
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| Postal address |
| ERA-EDTA Registry |
| Academic Medical Center |
| University of Amsterdam |
| Dept. of Medical Informatics,
J1b-125 |
| P.O.Box 22700 |
| 1100 DE Amsterdam |
| The Netherlands |
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| Visiting address |
| Meibergdreef 9 |
| 1105 AZ Amsterdam |
| The Netherlands |
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| Phone: +31 20 566 7637 |
| Fax: +31 20 691 9840 |
| E-mail: erareg@amc.uva.nl |
| Website: www.era-edta-reg.org |
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| TO DOWNLOAD AND PRINT THE PDF VERSION OF THIS NEWSLETTER CLICK HERE |
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NephroQUEST |
| From Carmine Zoccali, ERA-EDTA Registry Chairman |
Carmine Zoccali |
Even though this is a problematic, restructuring phase for most medical registries, thanks to the efforts of dedicated nephrologists and epidemiologists, renal registries in Europe receive increasing attention for the extension and the quality of information they collect. Apart from epidemiologic research, renal registries were initially used for planning the needs for treatment of ESRD and for gathering basic information on patient outcomes. Today there is an increasing demand by patients and health authorities alike for closer monitoring RRT. In some European countries reimbursement or certification already depends on quality assurance defined on the basis of validated indicators.
To respond to the demand for a better quality of renal care, in 2003 the ERA-EDTA registry committee envisaged a new initiative aimed at making available information that can be used in quality improvement programs. In essence this initiative aimed at accelerating the evolution of renal registries towards high quality clinical data-bases that may be used as quality control instruments. Thanks to the enduring commitment of the ERA-EDTA Registry,
the national registry representatives, QUEST working groups, and to the support of national societies, this initiative was translated into a project successfully submitted to the European commission. Nephro-QUEST is now a dream that becomes reality. This will soon provide European nephrologists with a benchmarking system useful for establishing regional and local quality improvement initiatives.
The positive attitude of national registries that embarked in this endeavour is a warranty that that this common effort will be successful and set the basis for new achievements of the European renal registries community. |
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NephroQUEST Progress Report 2008 |
From Kitty Jager, NephroQUEST Project Manager, Ronald Cornet, NephroQUEST IT Manager
and Carmine Zoccali, ERA-EDTA Registry Chairman |
Last autumn a consortium of 27 organisations from 17 countries, including renal registries, national and European societies for nephrology, including ERA-EDTA, an ICT institute, a dialysis company and a quality improvement institute launched NephroQUEST, a project funded under the Public Health Programme of the European Commission.
Last November the consortium set down to finalize a draft list of standardised clinical performance indicators that had been prepared by the QUEST clinical working groups on anaemia (chair F. Locatelli - Italy), calcium-phosphate metabolism (chair J. Cannata-Andia - Spain), cardiovascular risk (chair C. Wanner - Germany) and dialysis adequacy (chair J. Kooman – The Netherlands). Prior to the meeting the registries had collected further input from national registry committees and the boards of their national societies that was used for further decision-making.
Read
more |
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| Kitty J. Jager |
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| News on the QUEST Coding and Definitions Working Group |
From Keith Simpson, Working Group Chair and Paul van Dijk, ERA-EDTA Registry medical informatician |
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The standardization of clinical performance indicators and data retrieval routines have made it necessary to have a fresh look at the ERA-EDTA coding systems and definitions used by renal registries. The QUEST Coding and Definitions working group is currently working on the coding system for the causes of renal disease, the definition of treatment modalities and it is producing a list describing the comorbid illnesses.
According to the response on a survey some years ago the national and regional registries felt that the existing primary renal disease (PRD) coding system lacks detail and cannot be mapped to other international codes.
Read
more |
| Keith Simpson |
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| This newsletter arises from the NephroQUEST project, which has received funding from the European Union, in the framework of the Public Health Programme (project no: 2006114). |
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