•  provide reliable data on the epidemiology of renal replacement therapy (RRT) for end-stage renal disease (ESRD) by region in metropolitan France and in the overseas districts and territories

•  assess access to and outcome of dialysis and transplantation

•  monitor clinical performance measures and evaluate ESRD care policies

•  promote the development of clinical, epidemiological and economic research on chronic kidney diseases

•  contribute to the ERA-EDTA Registry report and participate in international studies

The REIN registry is used by health authorities to plan RRT. It will also be used to evaluate the 2004 national public health objectives including (1) stabilisation of ESRD incidence by 2010 and (2) improvement of patients' quality of life.

REIN organises a network of professionals and institutions including nephrologists, nurses, patients, epidemiologists, computer scientists, health care administrators and insurance representatives. It is coordinated at the national level by the French Transplant Agency (Etablissement français des Greffes, EfG), together with the National Institute of Health and Medical Research (Inserm) and Necker University Hospital. At the regional level, it is coordinated by a nephrologist with assistance from an epidemiologist or biostatistician in the public health department. It is financed by the National Health Insurance Fund (CNAMTS), the Ministry of Health and the National Institute of Public Health Surveillance (Institut national de la Veille Sanitaire, InVS) and has an annual budget of 1.1 million euros. Data collection includes ERA-EDTA registry core data as well as comorbid conditions and clinical performance measures. A major advantage of REIN is that it has imposed national standardisation of data collection and quality control procedures, all specified in the user's guide. Although not mandatory, dialysis centre participation in the registry is strongly encouraged both by the new 2002 law on RRT management and financial support.

The registry is spreading progressively across the country (figure) and the overall network should be completed by the end of 2006. In 2002, the age-and gender-adjusted incidence of RRT for ESRD (with the European population as the reference) in the first four participating regions covering 10 million people (Auvergne, Limousin, Lorraine, and Rhône–Alpes) was 126.4 per million population.

2002 REIN Annual Data Report and REIN Guide (in French) available on www.soc-nephrologie.org/accueil.html or www.efg.sante.fr/fr/pro/actu-point.asp

 

B. Stengel, MD, PhD
Inserm U 258 and REIN National Coordinating Center, EfG, Paris
ERA-EDTA Registry Committee Member