Welcome to webFC, the web site of the FranceCoag Network
FranceCoag Network is a cohort of French patients suffering from inherited deficiencies of coagulation proteins, such as haemophilia A and B, Von Willebrand’s disease or other rare inherited bleeding disorders. The network is based on most French medical centres responsible for the treatment of these patients. The FranceCoag network was set up in France in 2003, following a project called Suivi thérapeutique national des Hémophiles (SNH) started in 1994 and dedicated to haemophilia. Since 1 January 2004, the project is coordinated by the National Institute for Public Health Surveillance (InVS). It is led by a steering committee, with the participation of representatives of medical centres, public health authorities, public health agencies including the French Medicines and Health Products Safety Agency (ANSM) and representatives of one patients’ association.
The objectives of the FranceCoag Network are as follows:
- obtaining exhaustive information on the geographic distribution, the characteristics and the evolution of the population affected with haemorrhagic diseases due to hereditary deficiencies in coagulation proteins (ex: haemophilia, Von Willebrand’s disease) managed by specialized centres;
- making available sanitary surveillance allowing rapid investigation in case of suspicion of a new contagious agent transmitted by coagulation factors preparations;
- improving knowledge on the risk factors for inhibitor development in children affected with severe haemophilia and treatment modalities of inhibitors in these patients;
- assessing the feasibility, adherence, tolerance, and impact of standardized prophylactic treatments, in particular the primary prophylaxis in children affected with severe haemophilia.
The objectives and the methods of this project are described in detail in the protocol. A summary of the Protocol is downloadable on this site.
The FranceCoag Network is a useful tool available to every researcher (whether they participate or not in the Network) who wish to propose a research project for evaluation.