If you are considering taking part in a clinical trial, we recommend registering your interest with your neurologist and reminding him or her regularly. Sometimes it’s possible to directly contact the centre involved in the clinical study. The centre will then get in touch with your neurologist, whose involvement is essential.

It is also important to join a registry if they are available for your condition. Registries are databases that contain information about individuals affected by a particular condition. With permission, researchers and companies can view this information and recruit eligible patients for trials. The information registries contain can also help clinicians to understand more about the condition and develop care standards. Some registries send out regular newsletters updating patients on research and other relevant information.

Submitting your data to a registry does not mean that you are obliged to enrol in clinical trials; it just gives you the option of taking part.

Find your registry

Please click on the name of the condition to read further information about the UK or global registry for that condition. More information on country-specific registries can be found on the TREAT-NMD website.

The Collagen VI Alliance, which is made up of Muscular Dystrophy UK, Cure CMD, Muscular Dystrophy Ireland, AFM Telethon and Swiss Foundation for Research on Muscle Disease, is funding the development of a global registry for collagen VI-related dystrophies. This is for individuals who have been diagnosed with Bethlem myopathy, Ullrich congenital muscular dystrophy, or an intermediate form of these conditions.

Find out more on the registry’s website, or you can get in touch with the registry curator Dr Alison Blain: Alison.Blain@ncl.ac.uk, 0191 241 8605

Muscular Dystrophy UK has formed a partnership with the American patient organisation CureCMD to support the international congenital muscular dystrophy registry (CMDIR).
The CMDIR is for the many different types of congenital muscular dystrophy, some types of limb girdle muscular dystrophy (LGMD2K, LGMD2I, LGMD2L and LGMD2N), congenital myopathies and congenital myasthenic syndrome .
Find out more and register with the CMDIR.

National and global registries have been developed for Duchenne and Becker muscular dystrophies. People with Duchenne or Becker muscular dystrophy can register with the UK DMD Registry which is managed by Action Duchenne. For more information about this registry you can phone 0208 556 9955.

The UK FSHD registry is funded by Muscular Dystrophy UK and was launched in May 2013. The registry is curated by the TREAT-NMD team at Newcastle University. You can find out more about the registry and register at the UK FSHD Patient Registry website. For additional assistance please email fshdregistry@treat-nmd.eu.

A registry for people with hereditary inclusion body myopathy (also known as GNE myopathy, Nonaka disease, Quadriceps-sparing myopathy or distal myopathy with rimmed vacuoles) is available for people around the world. The registry has been developed by a team at Newcastle University with support from Treat-NMD.
People wishing to find out more about the registry can visit the website here or email lucy.imber@ncl.ac.uk

The Global FKRP (Fukutin-Related Protein) registry collects data from patients worldwide affected by a mutation in the FKRP gene. Most patients with this type of mutation have a type of limb girdle muscular dystrophy known as type 2I (LGMD2I), but FKRP mutations may also cause a form of congenital muscular dystrophy (CMD) known as MDC1C, and in rare instances the diseases known as Muscle Eye Brain (MEB) disease and Walker-Warburg Syndrome (WWS).
Find out more and register with the International FKRP registry. Or you can phone (+44) 0191 241 8605 or email coordinator@fkrp-registry.org.

Both limb girdle muscular dystrophy type 2B (LGMD2B) and miyoshi myopathy are caused by mutations in a gene called dysferlin (DYSF). The international dysferlin registry collects information from patients with these conditions.

For further information, or to register, please visit the registry’s website.

Limb girdle muscular dystrophy type 2A (LGMD2A) is caused by mutations in a gene called calpain-3 (CAPN3). The LGMD2A registry is managed by an organisation called Coalition to Cure Calpain 3.
For further information, or to register, please visit the registry’s website.

In 2012, Muscular Dystrophy UK partnered with the Myotonic Dystrophy Support Group to develop the UK Myotonic Dystrophy Patient Registry. Find out more by reading this leaflet or contact myotonicdystrophyregistry@treat-nmd.eu.

The Myotubular and Centronuclear Myopathy Patient Registry is an international registry developed by The Myotubular Trust and TREAT-NMD. It is currently jointly funded by Muscular Dystrophy UK and The Myotubular Trust. You can find out more at http://www.mtmcnmregistry.org or email the Curator at mtmcnmregistry@treat-nmd.eu

National and global registries have been developed for spinal muscular atrophy. More than 2000 patients have been entered into the global registry for spinal muscular atrophy from at least 33 national registries.
Find out more and register with the UK spinal muscular atrophy registry which is managed by TREAT-NMD and co-sponsored by SMA UK.

Frequently asked questions about registries

For more information about patient registries, including how personal data in the registries is protected, please read our Patient Registries FAQs.

We are currently funding four patient registries in the UK. It is only through your contributions that we can fund these vital research tools; donate now and join us in supporting these registries.

Contact us

Any questions can be emailed to the MDUK Research team at research@musculardystrophyuk.org

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