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 unites most French medical centres responsible for the treatment of these patients. Following a project started in 1994 dedicated to hemophilia and named Suivi thérapeutique national des Hémophiles (SNH), the FranceCoag network was set up in France in 2003. Since January 1st, 2004, the project has been coordinated by the National Institute for Public Health Surveillance (InVS). It is led by a steering comittee, with participation of representatives of medical centres, public health authorities, public health agencies including the French drug agency (Afssaps) and representatives of 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 a sanitary surveillance allowing rapid investigation in case of suspicion of a new contagious agent transmitted by coagulation factors preparations;
- advancing in knowledge on the risk factors for inhibitor developement in children affected with severe haemophilia and ways of treatment of inhibitors in these patients;
- assessment of 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 general Protocol and Pups Protocol. A summary of the general Protocol is downloadable on this site.
The FranceCoag Network is also a utility available to every researcher (participating in the Network or not) who may propose a research project which will be evaluated.