A morbidity registry is defined as a continuous and exhaustive nominative data collection record, concerning one or more health events, in a geographically defined population. It is compiled by a team with appropriate skills, for epidemiological and public health research purposes.
In 2016, 62 morbidity registries existed in France, distributed as follows:
- 18 general cancer registries
- 13 specialist cancer registries
- 6 cardiovascular or neurovascular disease registries
- 6 congenital abnormality registries
- 7 registries on various disorders
- 12 rare disease registries.
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Registries evaluated by the Comité d’évaluation des registres (CER, Registry Evaluation Committee)
Since 2014, the Registry Evaluation Committee (CER), an independent committee, has been responsible for the scientific evaluation of registries. The French Public Health Agency, Inserm and the French National Cancer Institute (INCa) are responsible for secretarial duties.
The CER has different objectives:
- Evaluate the registries, taking into consideration both their research and public health missions
- Issue recommendations on the function, together with the research and monitoring activities of the registry evaluated
- Evaluate the implementation of the recommendations
- Submit proposals to the Comité stratégique des registres (Strategic Registry Committee) in terms of the need for registries, notably with regard to epidemiology and the prevention and management policy
Members of the CER (November 2015):
Catherine Arnaud, Dominique Arveiler, Bernard Asselain, Ségolène Aymé, Anne-Marie Bouvier, Florence Molinie, Simone Pelissier-Mathoulin, Grégoire Rey, Isabelle Stucker, Elisabete Weiderpass Vainio.
From CNR/CNR-MR to CER
In May 2013, CNR and CNR-MR were abolished within the scope of the Comité interministériel de modernisation de l’action publique (CIMAP, Interministerial Public Action Reform Committee), like hundreds of other committees. Further to this decision, it was decided that a new Registry Evaluation Committee (CER) would be created, with the aim of being independent from registry funding bodies and regulatory authorities, together with a Strategic Committee in charge of guiding registry policy at a national level.
Registry policy defined by the Strategic Registry Committee (CSR)
The Strategic Registry Committee (CSR) is responsible for decision-making in terms of guiding registry policy, for instance, concerning priority for coverage or funding. This committee is made up of representatives from the regulatory authorities (Directorate General for Health, Directorate General for Health-care Supply, Directorate General for Research and Innovation), and three institutions (InVS-French Public Health Agency, Inserm and INCa). The Ministries of Health and Research alternately act as chair and secretary.
This committee carries out the following missions:
- Granting approvals according to CER evaluations
- Deciding on key directions for funding (by theme, suitability between resources-objectives, etc.). The final awards are issued by the institutions (Invs, Inca, Inserm), based on specific indicators (population, number of cases, supporting research teams, publications, etc.)
A partnership agreement between Inserm and InVS has defined the rules relating to funding and management of non-cancer registries. Epidemiological registries provide InVS and Inserm with high quality data, essential to the description of disorders, investigation of risk factors and evaluative description of diagnostic and therapeutic management, and follow-up. To benefit from their support, InVS and Inserm decided to set in place a funding policy to guarantee their long-term operation. Inca provides funding for registries linked to cancer.