TREAT-NMD patient registries - information for patients

TREAT-NMD patient registries for DMD and SMA

Information for patients

TREAT-NMD is currently setting up registries for patients with Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA). Other diseases may also have registries in future. Certain rare neuromuscular diseases have their own rare disease registry - click here for details.

For a general overview for patients about TREAT-NMD registries, please click here.

If you are a patient (or parent of a patient) with DMD or SMA and would like to register in a TREAT-NMD registry, you should do this via the registry in your country if one is available. Click on your own country's flag below to find out more.

(Please note that there is no benefit to you in registering in more than one country, since the data from each country's national registry is sent to the TREAT-NMD global registry.)

SMA and DMD national registries

 

  SMA DMD                                            
Australia Australian SMA Registry Australian DMD Registry                                            
Bulgaria Bulgarian SMA Registry Bulgarian DMD Registry                                            
Canada Canadian SMA Registry Canadian DMD Registry                                            
Czech Republic Czech SMA Registry Czech DMD Registry                                            
Finland Finnish SMA Registry Finnish DMD Registry                                            
France French SMA Registry French DMD Registry                                            
Germany German SMA Registry German DMD Registry                                            
Hungary Hungarian SMA Registry Hungarian DMD Registry                                            
Italy Italian SMA Registry Italian DMD Registry                                            
Japan   Japanese DMD Registry                                            
Netherlands Dutch SMA Registry Dutch DMD Registry                                            
Poland Polish SMA Registry Polish DMD Registry                                            
Portugal   Portuguese DMD Registry                                            
Spain Spanish SMA Registry Spanish DMD Registry                                            
Sweden   Swedish DMD Registry                                            
Switzerland Swiss SMA Registry Swiss DMD Registry                                            
Turkey Turkish SMA Registry Turkish DMD Registry                                            
UK UK SMA Registry UK DMD Registry                                            
Ukraine Ukrainian SMA Registry                                              
USA American SMA Registry American DMD Registry                                            
                                                 

 

If your country is not listed above, that means that we do not have any information about any registry initiatives there. If you still want to register, you can try the following:

  • Contact your local patient organisation to see if they are willing to work with TREAT-NMD to set up a registry.
  • Register in a different national registry that uses a self-report system (e.g. the UK or Germany). Please note that we encourage you to register only once, since the information from the national registries is transferred to the TREAT-NMD global database and there is therefore no benefit in registering in more than one country.

Where do I go from here?