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 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 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.
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)|
|Myotubular and centronuclear myopathy||MTM and CNM||International|
|Spinal muscular atrophy||SMA||National|