The French National Registry of patients with Facioscapulohumeral muscular dystrophy.

Céline GuienGaëlle BlandinPauline LahautBenoît SansonKatia NehalSitraka RabarimeriarijaonaRafaëlle BernardNicolas LévySabrina SacconiChristophe Béroud

Published in: Orphanet journal of rare diseases (2018)

The French National Registry of FSHD patients belongs to a national effort to develop databases, which should now interact with other initiatives to build a European and/or an international FSHD virtual registry for the benefits of patients. It is accessible at www.fshd.fr and various useful information, links, and documents, including a video, are available for patients and professionals.

Keyphrases

end stage renal disease
newly diagnosed
ejection fraction
chronic kidney disease
muscular dystrophy
prognostic factors
healthcare
social media
deep learning
artificial intelligence
patient reported