Definition
Since 2007, the MFM databank collects the MFM results of all child or adult patients presenting an identified or suspected neuromuscular disease. It was created in collaboration with D. Hamroun et C. Béroud in Montpellier (INSERM U827, director M. Claustres), who coordinate the establishment of the Universal Mutation Database (UMD) databanks.

The MFM databank is accessible to the various evaluation centres. In particular, it makes it possible to obtain individual MFM evolution curves, in order to follow each patient and adapt treatments. Any identified practitioner, therapist or doctor, can collect and consult his own data in the databank. 

The databank has an authorisation from the CNIL (French Data Protection Authority). A charter and internal rules were also developed. It is managed by a curator, in charge of controlling the reliability of the recorded data: Christine Payan, doctor, Institut de Myologie, Paris.


Objectives
- To describe the natural history of neuromuscular diseases and the effect of the treatments, by collecting a maximum of results.
- To calculate evolution slopes of MFM scores by diagnostic group.
- To establish connections between genotype and phenotype thanks to the link with the UMD system. The UMDs provide anonymous information via Internet about all the mutations identified in certain pathologies.
- To estimate the number of patients and the length of observation necessary to highlight differences in drug or interventional trials.
- To increase the number of data of the patients included in the initial validation study. For example, in the group of DMD patients, it will be possible to confirm the MFM’s capacity to predict the age of loss of ambulation.
- To validate the MFM for new pathologies and for age brackets other than 6-60 years. naturelle des maladies neuromusculaires et l’influence des thérapeutiques, en recueillant le maximum de résultats.


Collection and access to the data
Evaluation centres that wish to apply for access to the MFM bank should contact Christine Payan at the Institut de Myologie, Hôpital Pitié-Salpétrière, 75651 Paris cedex 13 (c.payan@myologie.chups.jussieu.fr). 
The physician has to complete and sign the charter and agreement and send it to C Payan, the curator of the bank. She will send back to him a log-in and a password.
Download: MFM database charter

Doctor Christine PAYAN
Hôpital Pitié Salpétrière
75651 Paris cedex 13


During each MFM, it is easier to perform a direct computer input of data collected from the patient. During each MFM, it is easier to perform a direct computer input of data collected from the patient. If you can not directly input data, a paper form for collecting data is downloaded. And you can enter  the data collected later in the bank MFM.
Download: Data collection MFM