National patient registries for SMA
TREAT-NMD has set up an international registry for patients with Spinal muscular atrophy (SMA). This registry collects data from registries across the world.
If you are a patient (or parent of a patient) with SMA and would like to register in the TREAT-NMD registry, you should do this via the registry in your country if one is available.
(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.)
To quickly find your national registry, start typing your country name into the box below.
An Algerian NMD Patient Registry has now been opened, and patients with DMD/BMD or SMA, or their families, can find more information about this registry on the website: http://shifa.ash.com (section "La Recherche")
More information coming soon! In the meantime, please contact Soledad Monges.
The Australian SMA registry in currently under development and it is envisaged that this will be fully operational soon.
Once up and running the information gathered will then be added to the global TREAT-NMD registry.
In the meantime, please contact Hugh Dawkins .
The Belarusian Patient Registries for SMA and DMD has not been developed yet. However, there are particular efforts to set up these registries in the near future.
More information coming soon! In the meantime, please contact Peter Van den Bergh.
DMD/BMD and SMA patient registries are being planned in Brazil.
The first holder and sponsoring organisation of the registries will be Sao Paulo University, Department of Child Neurology, Sao Paulo City.
The Bulgarian patient registry for Duchenne/Becker Musucular Dystrophy and Spinal Muscular Atrophy is located at University Hospital Alexandrovska, Clinic of Neurology in Sofia.
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.
More information about the Danish registries can be obtained by contacting either Ole Gredal or Jes Rahbek who are both from the National Danish Rehabilitation Centre for Neuromuscular Diseases.
Estonia is planning to set up TREAT-NMD patient registries for DMD/BMD and SMA.
The Finnish NMD registry for DMD and SMA patients is maintained by The Finnish Neuromuscular Disorders Association in collaboration with Finnish universities.
The French SMA database is under construction. This UMD-SMA database will be located in Montpellier.
The German patient registry for Spinal Muscular Atrophy is located at the Ludwig-Maximilians University in Munich and co-sponsored by the German SMA patient organisation.
The Hungarian patient registry for Spinal Muscular Atrophy is located at the Department of Molecular Genetics and Diagnostics of the National Institue of Environmental Health.
The Italian Registry of NMD Patients is sponsored by the Associations Aisla, ASAMSI, Famiglie SMA, UILDM and the Telethon Foundation; it houses data of persons affected by DMD/BMD and SMA.
Based in the University Medical Centre Utrecht the registry will start as a professional report, but we are currently investigating the possibility to make it a combination of self and professional report and so is still under construction.
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) and Charcot-Marie-Tooth disease (CMT).
The Polish Registry of Patients with Neuromuscular Diseases is created at the Department of Neurology, Medical University of Warsaw within the project „Clinical and genetic characteristics of neuromuscular diseases for future application of gene therapy”.
The registry of NMD patients in Russia is under construction.
At the moment there are two independent databases - in Moscow and in St Petersburg. In the future, a combination of these two databases is planned.
The Spanish patient registry for Spinal Muscular Atrophy is finishing the process of being set up. This is a professional registry that will include data from genetically confirmed SMA patients. The registry is part of the GENAME Project co-sponsored by GENOMA ESPAÑA and FUNDAME (Parents SMA Foundation).
The Swiss patient registry for Duchenne Muscular Dystrophy and Spinal Muscular Atrophy is a professional-report registry located at the Neuropediatric Unit, Centre Hospitalier Universitaire Vaudois (CHUV) in Lausanne.
The Children's hospital neurology department in Skopje, Macedonia, is planning to set up TREAT-NMD patient registries for DMD and SMA.
Turkish patient registries for DMD and SMA are being set up in Ankara and Istanbul, at the Hacettepe University, Faculty of Health Sciences, Department of Physical Therapy and Rehabilitation, Muscle Disorders Unit in Ankara, and at İstanbul University, İstanbul Faculty of Medicine, Department of Neurology, Physical Therapy and Rehabilitation Unit.
Call 0312 3052525 / 179
The Ukrainan patient registry for Spinal Musucular Atrophy is located at the Institute of Neurology, Psychiatry and Narcology of Academy of Medical Science of Ukraine in Kharkiv and co-sponsored by the Kharkiv Foundation “Children with spinal muscular atrophy”
The UK SMA registry is located at Newcastle University and is co-sponsored by The Jennifer Trust. The investigator in charge is Professor Hanns Lochmüller and the database curator is Dr Brigitta von Rekowski.