[Data collection about the case management of end-stage renal insufficiency. Feasibility study. Nephrology...

End-stage renal failure (ESRD) is an important public health issue, because of both the increasing number of patients requiring renal replacement therapy and the cost of treatment. The need for a reliable data system, capable of describing the patient care network as a whole, including dialysis or transplantation, has often been reiterated. The Direction Générale de la Santé (the French Department of Health) commissioned INSERM (the National Institute of Health and Medical Research) to "study the feasibility of different scenarios of data collection about ESRD patient care in order to meet the priority needs of health care administration, physicians, and researchers". Analysis of these needs allowed the goals to be defined: to provide an accurate picture of ESRD patient care in order to guide and evaluate health care policy, to inform clinicians, and to provide a tool for more focused special studies in renal research issues. Three scenarios were studied: the first would use data systems of both the government and the National Health Insurance system for planning health care services, upon EfG (The French Transplant Agency) network to evaluate transplantation, and upon a few regional registries for epidemiology and research; the second is based on repeated cross-sectional surveys; the third would rely upon the organization of an information system, the Renal Epidemiology and Information Network (REIN). Regional centers and a national coordinating office would register and follow-up ESRD patients, principally to evaluate health care supply and quality. The REIN database would also be a resource for research. The advantage of the first scenario is its low cost; its principal drawback is that evaluations will not be possible in the regions without registries. The second suggestion is inadequate. The last project would fulfil the goals that were defined. The REIN data system would be a true public health project of interest to all the participants and institutions in this field.