Facioscapulohumeral muscular dystrophy

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.

The NZ NMD Registry covers all neuromuscular disorders that it's primary sponsor, MDANZ, supports.

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 Czech and Slovak patient registry Spinal Muscular Atrophy is located at the Masaryk University in Brno, where it was developed by the Institute of Biostatistics and Analyses.

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 [email protected] or by telephone on +202 010017580.

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 countries of the European Union, Specialised Centres in Neuromuscular Diseases has contributed to the establishment of a more appropriate care. However, national and international recommendations on specific aspects of certain diseases, such as DMFSH, have not yet been established. These recommendations enable harmonization of clinical practices between the various national and international centers specialized in neuromuscular diseases and bring an improvement in clinical practice for patients

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.

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).

MDA

Register slovenskih otrok z živčno-mišičnimi obolenji

Registry of Slovenian children with neuromuscular diseases

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

[email protected]

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.

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.