Facioscapulohumeral muscular dystrophy

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.

National patient registries

FSHD registry - Canada
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 country to improve the understanding of neuromuscular disease and accelerate the development of new therapies.

More Info

 

FSHD registry - Czech Republic
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.

More Info

 

NMD registry (DMD, BMD, FSHD, LGMD, GNE, DM) - Egypt
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 welcome registrations from patients with these conditions in other Arab countries. The registry aims to improve understanding about neuromuscular diseases, standards of care and treatment.

The registry is maintained by Egypt Air Hospital. For more information please contact Dr. Rasha El Sherif at dr.rashaelsherif@gmail.com or by telephone on +202 010017580.

More Info
Email

 

FSHD registry - France
FSHD registry - France

A registry for French Patients is currently in development and is expected to launch shortly.

For information in the meantime please visit the website:  www.fshd.fr

More Info

 

FSHD registry - Netherlands
FSHD registry - 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 Spierziekten Nederland, the Dutch Association of Neuromuscular Disorders.

 

This collaboration between patients and researchers will increase knowledge of FSHD with the ultimate goal to treat symptoms and improve quality of life. The website www.FSHDregistratie.nl informs (future) participants about the registry goals, to whom the registry is open, how to register, how many are registered at the moment and where to go with questions regarding the registry.

 

We aim to extend the registry in the future with a feedback function enabling participants to make use of the data they provided, integrated with data based on the whole registry population or specific subgroups.

More Info

 

FSHD registry - New Zealand

The NZ Neuromuscular Disease Registry covers all neuromuscular conditions including Duchenne and Becker muscular dystrophies (DMD and BMD), spinal muscular atrophy (SMA), myotonic dystrophy (DM), Charcot-Marie-Tooth disease (CMT) and facioscapulohumeral muscular dystrophy (FSHD).


More Info

 

Registry of Slovenian Children with Neuromuscular Diseases
Registry of Slovenian Children with Neuromuscular Diseases

Register slovenskih otrok z živčno-mišičnimi obolenji

Registry of Slovenian children with neuromuscular diseases


Website www.pednevro.pedkl.si

 

FSHD Dutch Registry
FSHD Dutch Registry

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 Spierziekten Nederland, the Dutch Association of Neuromuscular Disorders.

This collaboration between patients and researchers will increase knowledge of FSHD with the ultimate goal to treat symptoms and improve quality of life. The website www.FSHDregistratie.nl informs (future) participants about the registry goals, to whom the registry is open, how to register, how many are registered at the moment and where to go with questions regarding the registry.

We aim to extend the registry in the future with a feedback function enabling participants to make use of the data they provided, integrated with data based on the whole registry population or specific subgroups.

Contact

Hanneke Deenen or Annet Geerlings

registratieFSHD@radboudumc.nl


More Info
Email

 

FSHD registry - United Kingdom
FSHD registry - United Kingdom

The UK FSHD patient Registry is run from Newcastle University with support from the Muscular Dystrophy Campaign and in close collaboration with other clinical centres and patient representatives across the country.

More Info

 

FSHD registry - United States of America
FSHD registry - United States of America

The National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy

This registry, which is funded by the US National Institutes of Health and based at the University of Rochester, has the primary goal of facilitating research in DM and FSHD by establishing a mechanism for contact between researchers and patients. Secondary goals include collection of self-reported data from patients, education of patients and care providers, and promoting a sense of community and involvement in the research process.

 

More Info

 

Please note there is no benefit to you in registering in more than one registry.

 
28 Oct 2013