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Registers

A register is defined as a continuous and exhaustive collection of personal data concerning one or more health events in a geographically defined population. It is put together for the purposes of epidemiological research and public health by a team with the appropriate skills.

Inserm unit 866

Inserm unit 866 "Lipids Nutrition Cancer", Faculty of Medicine in Dijon

By quantifying and characterizing the prevalent cases and incident cases of a disease in a given region, morbidity registers are both an irreplaceable tool for health surveillance and very high quality databases for public health research.

Given the twofold purpose of registers, surveillance and research, in 1995 the French Ministries of Health and Research decided to run the register system jointly by creating a National Committee of Registers.

By the order of 6 November 1995, a National Committee of Registers (NCR) was set up under the French Ministries of Research and Health. Its members are renewed at regular intervals. The CEO of the French National Institute for Health Surveillance (l'InVS) and Chairman and CEO of Inserm co-chair the NCR. By delegation of the Chairman and CEO of Inserm, the French Public Health Institute has co-chaired the NCR alongside the InVS since 2008.

The NCR gives opinions on the qualification of registers, based on an expertise procedure that it has defined in its internal regulations. The registers are qualified for 3 years when they are being created and for 4 years when this initial qualification is being renewed. Qualification entitles the register to receive funding from Inserm and the InVS. 30 registers are currently qualified, over half of which are cancer registers. Five of them concern congenital malformations, four cardiovascular diseases and two childhood disabilities.

Since 2007, a National Committee of Registers specializing in rare diseases (NCR-RDs) has been set up alongside the conventional NCR. This came about to deal with the increase in qualification requests from rare disease registers, as the conventional NCR was finding it difficult to address the specific nature of rare disease registers (patient follow-up in these registers is more stringent than the criteria of case exhaustiveness and incidence calculation). At present, six rare disease registers are qualified, including one on cystic fibrosis.

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