History

FranceCoag was set up following the implementation of the cohort “Suivi thérapeutique National des Hémophiles” (SNH) in 199.

Its initial purpose was to meet the health objectives of pharmacosurveillance and was limited to haemophilia and targeted at patients receiving treatment². The SNH included a database and a biolibrary, the collection of which was activated during two periods (1994 to 2002 and 2008 to 2011) and was definitively stopped in 2011.
The SNH evolved into the “FranceCoag Network” in 2003, with an epidemiological objective extended to all MHC caused by hereditary coagulant protein deficiencies (DHPC). In January 2017, the management of this system, previously carried out by Inserm and then INVS since 2004, was entrusted to Assistance Publique Hôpitaux de Marseille (AP-HM). The “FranceCoag Network” scheme has been renamed “FranceCoag” (FC)³.

³Doncarli A, Demiguel V, Guseva Canu I, Goulet V, Bayart S, Calvez T, et al. FranceCoag: a 22-year prospective follow-up of the national French cohort of patients with inherited bleeding disorders. Eur J Epidemiol. 2019 May;34(5):521–32.

Objectives

The CF scheme pursues public interest objectives:

• Provide public authorities and patient associations with aggregate information on epidemiology and vigilance;
• Provide information to data providers (institutional partners including the MHEMO network) on active patient files and their activity (clinical practices);
• Offer a secure database to public and private research players.

FC aims to centralise, unify and archive the personal data of HCM patients on a national scale.
More specifically, the FranceCoag scheme has the following main general objectives:

• Epidemiological: exhaustive knowledge of the geographical distribution, socio-demographic characteristics and evolution of the population affected by HCM;
• Health and pharmacology monitoring: identification and long-term prevention of risks linked to exposure to sensitive therapeutics;
• Research, involving the implementation of dynamic monitoring of a population of incident cases and the provision of an accessible database for the development of ancillary research projects, in particular the matching of the database with data from the National Health Data System (SNDS).