DM1 registry - France
The French Registry for Myotonic Dystrophy is a national initiative in France that specialists caring for myotonic dystrophy patients contribute to. It is purely based on professional report during clinical consultations.
Its overall aim is that of enabling the standardized characterization of the French DM1 population. Its objectives include clinical management, natural history, genotype-phenotype correlations, comparison of DM1 and DM2, comparison of prognostic factors, identification of homogeneous patient subgroups and recruitment for trials.
The French registry will contribute data to the TREAT-NMD global registry for DM1 when this is launched in 2010.
For further information contact Dr Guillaume Bassez.