SMA registry – France
The French registry for patients with SMA is located in Montpellier. The database (known as the UMD-SMN1 France database) is financed by AFM (Association Française contre les Myopathies) and is a result of a major national effort involving all French molecular diagnostic laboratories and reference centers for neuromuscluar diseases.
This database aims to collect the molecular and clinical data of all individuals in France with proximal SMA linked to the SMN1 gene. The centralised collection of this data will allow to better understanding of the SMN1 gene mutations, to study the natural history of the disease, to establish genotype/phenotype correlations and to identify patients likely to participate in clinical research.
The UMD-SMN1 France database also participates in the TREAT-NMD network and, subject to signed informed consent by the participants, contributes to the achievement of the TREAT-NMD global database.
The website of the UMD-SMN1 France database is available at http://www.umd.be/. The data are collected through the network of French diagnostic laboratories and reference clinical centers. Should you have any question, please contact the molecular coordinator in charge of the registry: Dr Pascale Saugier-Veber.