New report ranks facioscapulohumeral muscular dystrophy (FSHD) as the most prevalent muscular dystrophy.
A consortium of European partners known as Orphanet, led by the French, and including both government and private members, has issued new epidemiology data that ranks FSHD / facioscapulohumeral muscular dystrophy as the first and most prevalent muscular dystrophy.
To read the report and to review the methodology, including data collection procedures and standards, go to the Prevalence of rare diseases: Bibliographic data report (listed in alphabetical order by disease).
This report contains new epidemiological data and modifications to existing data. This new information ranks facioscapulohumeral muscular dystrophy (FSHD) as the most prevalent muscular dystrophy followed by Duchenne (DMD) and Becker muscular dystrophy (BMD) and then in turn, Steinert myotonic dystrophy (DM). FSHD has historically been thought of as the third most prevalent muscular dystrophy, but this new data ranks it as the first and most prevalent.
The report, “Prevalence of rare diseases,” includes the complete survey results for the inventory of rare diseases. It is in the “Orphanet Reports Series,” publications covering topics relevant to all rare diseases. The Orphanet site is http://www.orpha.net/ and includes comprehensive resources for rare diseases and orphan drugs. Orphanet’s sponsors include INSERM [Insitut national de la santé et de la recherche medicale] and the European Commission.
The report will be updated and published regularly at this site.
Estimated prevalence (cases / 100,000)
Facioscapulohumeral muscular dystrophy (FSHD): 7
Duchenne (DMD) and Becker Muscular dystrophy (BMD): 5
Steinert myotonic dystrophy (DM): 4.5
Within the dystrophies this is very much in line with our experiences over the past two decades of working in muscular dystrophy.