Definition
Since 2007, the MFM database 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) databases.
The MFM database 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 database.
The database 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, Assistance Publique Hôpiaux de 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 (christine.payan@psl.aphp.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
Département de Pharmacologie Clinique
Bat. La Force
Hôpital Pitié-Salpêtrière
47 bd de l'Hôpital
75651 Paris Cedex 13
France
tel 33 (0) 1 42 16 16 67
fax 33 (0) 1 45 86 52 76
The patient data to be entered in the database are subject to information and consent. The patient or his legal representative must mandatory sign the document to be kept by each institution ; the curator of the database may request a copy.
Download MFM database Information and consent
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
Here is the list, updated to 2012 February15th , French centers that capture in the database MFM:
| Angers |
CHU d'Angers |
| Besancon |
CHU de Besancon |
| Bordeaux |
CHU de Bordeaux |
| Clamart |
Hôpital Antoine Béclère |
| Clermont-Ferrand |
CHU Estaing |
| Flavigny sur Moselle |
Centre de Médecine Physique et de Réadaptation de l’Enfance |
| Garches |
Service de rééducation pédiatrique de l´Hôpital Raymond Poincaré |
| Garches |
Hôpital Raymond-Poincaré - adultes |
| Grenoble |
CHU de Grenoble - Adultes |
| Grenoble |
CHU de Grenoble - Enfants |
| Hendaye |
Hôpital Marin |
| La Réunion |
Hôpital St-Pierre |
| La Réunion |
CHR Félix Guyon, Médecine Physique |
| La Turballe |
Centre de rééducation de Pen Bron |
| Lille |
Hôpital Swinghedaw |
| Limoges |
Service de rééducation adultes de l´Hôpital Universitaire Dupuytren |
| Lyon |
Fondation Richard Centre d'éducation motrice et Centre pour adultes |
| Lyon-Bron |
Hopital Neurologique - GHE |
| Lyon-Bron |
Unité Enfant Handicapé - L´Escale - Hôpital Femme Mère Enfant GHE |
| Marseille |
CHU La Timone- enfants |
| Montpellier |
Hôpital Gui De Chauliac-CHRU |
| Mulhouse |
Centre Hospitalier Emile Muller |
| Nancy |
CHU de Nancy - adultes |
| Nice |
Service de rééducation adultes de l´Hôpital de l´Archet |
| Palavas les flots |
Institut Saint-Pierre Hôpital d'enfants |
| Paris |
Institut de Myologie de l´Hopital Pitié-Salpêtrière |
| Paris |
Centre Saint Jean de Dieu |
| Paris |
Hôpital Necker - Enfants malades |
| Paris |
Hôpital Armand Trousseau |
| Ploemeur |
Centre de rééducation Kerpape |
| Ramonville |
Centre Paul Dottin |
| Reims |
Hôpital Américain |
| Rennes |
Hôpital Pontchaillou |
| Roanne |
Services d’Education Spécialisée et de Soins à Domicile |
| Roscoff |
Centre de Peharidy |
| Saint Etienne |
Hôpital Bellevue - Adultes |
| Saint Etienne |
CHU Saint Etienne -Enfants |
| St Georges sur Loire |
Résidence "La Forêt" |
| Tours |
CHU Clocheville Hôpital des enfants |
| Tours |
Centre Trousseau - adultes |
| Trevou-Treguignec |
CHR Pierre Le Damany |
| Valence |
Section d'éducation motrice |
| Vandoeuvre les Nancy |
Service de réeducation pédiatrique |
| Villeneuve d’Ascq |
A.P.F centre de rééducation Marc Sautelet |
Here is the list, updated to 2012 February15th , foreign centers that capture in the database MFM:
| Argentine |
Buenos-Aires Hosp. B . Rivadavia |
| Belgique |
Bruxelles Cliniques Universitaires St Luc |
| Belgique |
Louvin University Hospitals Leuve |
| Brésil |
Campinas States University - UNICAMP |
| Suisse |
Lausanne Centre hospitalier universitaire vaudois |