Facioscapulohumeral muscular dystrophy
An internationally agreed core dataset was established in 2011 to set out the information that all registries should collect in order for their data to be comparable (see the links section on the left). As a result of this, a number of registries have been established with more being developed. If you are a patient (or parent/guardian of a patient) with FSHD and would like to register in a patient registry, you should do this via the registry in your country if one is available.
Patient Registries
FSHD registry – Canada
The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from patients across the countr …
FSHD registry – Czech Republic
The Czech patient registry for Facioscapulohumeral Muscular Dystrophy is located at the Masaryk University in Brno, where it was developed by the Institute of Biostatistics and Analyses.
The National Rehabilitation Centre for Neuromuscular Diseases
More information about the Danish registries can be obtained by contacting Ulla Werlauff from the National Danish Rehabilitation Centre for Neuromuscular Diseases.
NMD registry (DMD, BMD, FSHD, LGMD, GNE, DM) – Egypt
The Egyptian NMD registry is now open for registrations from DMD/BMD, LGMD, GNE, DM, CMD and FSHD patients in Egypt. Registrations from SMA patients will be possible in the near future. We also welcom …
FSHD registry – France
Such Observatory is essential to clinical research, epidemiology and genetics is needed to promote the development of therapeutic trials. In recent years, the creation in France and in other countr …
Italian National Registry for Facioscapulohumeral Muscular Dystrophy
A National Italian Registry for Facioscapulohumeral Muscular Dystrophy (FSHD) Facio-scapulo-humeral muscular dystrophy (FSHD) is among the most common hereditary muscle diseases. It affects the muscul …
NMS datu kolekcija (Latvian NMD Registry)
For information on the Latvian DMD registry please contact Ieva Micule or Signe Setlere.
Lebanese Neuromuscular Disease Registry
The Lebanese Neuromuscular Disease Registry is managed by L.A.N.D. (Lebanese Association for Neuromuscular Diseases) a support group that will spread awareness and support patients and families affect …
FSHD Registry – The Netherlands
The Dutch FSHD registry was launched in March 2015 and is run by the dept. of Neurology, Radboud University Nijmegen Medical Centre in collaboration with the Dutch Association for FSHD and Spierziekte …
New Zealand Neuromuscular Disease Registry
The NZ NMD Registry covers all neuromuscular disorders that it’s primary sponsor, MDANZ, supports.
Registry of Slovenian Children with Neuromuscular Diseases
Register slovenskih otrok z živčno-mišičnimi obolenji Registry of Slovenian children with neuromuscular diseases
Neuromuskulära sjukdomar i Sverige (Neuromuscular Disorders in Sweden)
This registry is based on professional reporting system and now includes SMA, DM1, congenital myopathies, congenital muscular dystrophies, and LGMD. For further information, please contact Björn Lindv …
KUKAS
Turkish patient registries for DMD and SMA are being set up in Ankara and Istanbul, at the Hacettepe University, Faculty of Health Sciences, Department of Physical Therapy and Rehabilitation, Muscle D …
UK Facioscapulohumeral (FSHD) Muscular Dystrophy Patient Registry
The UK FSHD patient Registry is run from Newcastle University with support from the MDUK and in close collaboration with other clinical centres and patient representatives across the country.
FSHD registry – United States of America
The National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular DystrophyThis registry, which is funded by the US National Institutes of Health and based at the University of Rochester, h …
DM1 registry – United States of America
The National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy is based at the University of Rochester and funded by the National Institutes of Health.
Please note there is no benefit to you in registering in more than one registry.
