Different types of registries

Patient registries can be set-up in different ways and this can depend on a variety of factors.

The different types of registries are:

  • Patient self-reported (only patients are asked to provide information – generally through a publically available website)
  • Professional reported (only doctors provide information – these registries generally do not have a publically available website)
  • Combination of patient self-report and professional report (some information is provided by both patients and their doctor – generally has a publically available website)

Patients looking for a registry specific to their condition should bear in mind that there may only be a professional reported registry available. Participation in a registry like this should be discussed directly with a neurologist.

National Registries

National registries are set-up for patients living in one particular country

There may be many national registries in different countries that have been set-up for the same condition. They all serve the same purpose but are set-up independently of each other and may collect different information, depending on the purpose. National registries are generally set-up for conditions where there is deemed to be enough patients present in that country to warrant a country specific registry, such as DMD and SMA.

International Registries

International registries are developed for 'ultra-rare' conditions

Some conditions are classed as ultra-rare and in these instances it is often felt that setting up national registries is unnecessary, when the number of patients in each country is likely to be very low. International registries are therefore seen to be more appropriate. In this case only one registry is set-up for a particular condition and patients from around the world are asked to register there.

Patient registries have been set-up for various neuromuscular conditions and the list can be found below, including whether they have been set-up as a national or an international registry. For national registries click on the relevant links below to find out which countries have a registry available.


Disease name

Abbreviated name

Type of registry

Congenital muscular dystrophies

CMD

International

Congenital myasthenic syndromes

CMS

International (under construction)

Charcot Marie Tooth Disease

CMT

International

Duchenne/Becker muscular dystrophy

DMD/BMD

National

Facioscapulohumeral muscular dystrophy

FSHD

National

Hereditary inclusion body myopathy

HIBM/GNE Myopathy

International

Limb girdle muscular dystrophies

LGMD

International (several)

Myotonic dystrophy

DM

National

Myotubular and centronuclear myopathy

MTM and CNM

International

Spinal muscular atrophy

SMA

National

 

 
12 Apr 2017