Who are we?

FranceCoag is a national system based on the registration of personal data on patients suffering from Constitutional Haemorrhagic Disease (CHD)¹ by 34 centres identified by the Filière Maladies Rares MHEMO and participating in the creation of a database (FranceCoag Database).

The FranceCoag scope includes the following HCMs: haemophilia, severe forms of rare HCM due to another inherited coagulation protein deficiency (HCPD: afibrinogenemia, FII, FV, FVII, FX, FXI and FXIII deficiencies, FV+VIII, combined vitamin K-dependent factor deficiencies), symptomatic forms of Willebrand disease (WM) and inherited platelet disorders.

FranceCoag is a national registry for rare haemorrhagic diseases, except for minor haemophilias and non-severe WM (types 1 or 2), where it is a case collection centre. FranceCoag is the epidemiological tool of the MHEMO network. It collects the minimum data set required by the BMDMR and the interoperability of exchanges has been validated by the BNDMR. FranceCoag is one of the four largest international systems in this field, alongside Community Count (Registry for Bleeding Disorders Surveillance founded by the CDC Centres for Disease Control in the United States), the NHD (National Haemophilia Database in the United Kingdom) and the CHR (Canadian Hemophilia Registry in Canada).

 ¹Doncarli A, Demiguel V, Guseva Canu I, Goulet V, Bayart S, Calvez T, Castet S, Dalibard V, Demay Y, Frotscher B, Goudemand J, Lambert T, Milien V, Oudot C, Sannié T, Chambost H; FranceCoag Network. 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):521-532. doi: 10.1007/s10654-018-0468-7. Epub 2018 Dec 5. PMID: 30515664.