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
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.
Call +44 (0) 191 241 8640
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@example.com 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
Call +39 059 2055440
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).
Register slovenskih otrok z živčno-mišičnimi obolenji
Registry of Slovenian children with neuromuscular diseases
Call +34 91 8222044