The MFM database

Definition

The MFM database collects results of MFM tests administered to children and adults with identified or suspected neuromuscular diseases since 2007. The MFM database was originally developed in collaboration with D. Hamroun and C. Béroud in Montpellier (INSERM U827, director M. Claustres), who coordinate the establishment of the Universal Mutation Database (UMD).
The MFM Database is accessible to the different evaluation centers. In particular, it makes it possible to obtain individual MFM evolution curves, to follow each patient and to adapt the therapeutics. Any identified practitioner, physiotherapist or physician can collect and consult their data in the database.

The database has been declared to the French “Commission Nationale de l’Informatique et des Libertés” (CNIL). A charter has been developed. The base is administered by a curator, responsible for checking the reliability of the recorded data: Christine Payan, physician, Assistance Publique Hôpitaux de Paris.

Objectives

To monitor the evolution of each patient

To describe the natural history of neuromuscular diseases and the influence of therapeutics, with maximum results

To calculate evolution slopes of MFM scores by diagnostic group

To estimate the number of patients and the duration of observation required to highlight differences in therapeutic or interventional trials

To increase the number of patient data included in the initial validation study. For example, in the DMD patient group, it will be possible to confirm the ability of the MFM to predict the age of walking loss

To validate the MFM in new diseases et and for age groups other than 6-60 years

To allow phenotype-genotype correlation analyzes

Collection and access to data

Interested evaluation centers may request access to the MFM database. The Referring Physician must complete and sign the Charter and access agreement, then send it to Pascal Rippert (pascal.rippert@chu-lyon.fr). In return, he will be sent an identification containing “Username” and “Password”.
Download: MFM Database Charter and Agreement

The data to be entered concerning patients are the subject of an information and consent note. The patient or their legal representative must sign the document that will be kept by each institution.
Download: Information and Consent Note

For each MFM completion, it is preferable to perform a direct computer input of the data collected from the patient. If you cannot input directly, a paper form for data collection is available for download. You can then later input the collected data into the MFM database.
Download: MFM Scoring Sheet

Overview

To date, over 9100 MFM from in 3680 patients are recorded. The MFM input rate in the database since 2007 is about 500 new MFM per year.
In 54.8% of cases, the patient was a minor at the time of the MFM completion. The number of MFM per patient ranges from 1 to 21, with an average of 3.3 MFM per patient.
The diseases most commonly represented in the database are Steinert myotonic dystrophy (720 patients), Duchenne muscular dystrophy (426 patients), Charcot-Marie-Tooth diseases (366 patients), Facioscapulohumeral Muscular Dystrophy (310 patients) and Spinal Muscular Atrophy (269 patients).