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How can a patient participate ?

In France, a network of specialised "neuromuscular disease" consultations plays a major role linking research groups with patients. They are the first to get involved in recruiting patients affected by a neuromuscular disease for clinical trials and they select those who meet the inclusion criteria. In effect, some patients won't be considered if they don't meet the inclusion criteria. A trial protocol includes a list of conditions concerning the patient (age, sex, associated diseases, medication etc.) and the disease (diagnostic criteria, clinical forms, etc.). These inclusion criteria allows for the creation of a homogeneous group of participants who share common characteristics. This is necessary for a comparative study and for the correct assessment of the results. Exclusion criteria aim to protect patients' health and to avoid biased results.
 
Apart from specialised consultations, information about trials sponsored by AFM can be found on this site, in the VLM magazine and in patients' grou

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Eurordis
A coalition of associations jointly founded by AFM to promote the development of European regulations on rare disorders and orphan drugs. On its English and French site, Eurordis provides information on its member associations, European regulations and institutions

Orphanet
Database on rare diseases and orphan drugs (information on the disease, combinations of diseases, consultations in France, etc); research by disease name (you can enter the name of the disease, even incomplete), diagnostic laboratories, clinical trials, research programs, consultations, associations, professionals (by name and specialty), drugs.


Update 2006/03/07
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