National DMD registries
TREAT-NMD has set up an international registry for patients with Duchenne muscular dystrophy (DMD). This registry collects data from national registries across the world.
If you are a patient (or parent of a patient) with DMD 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.
DMD Registry - Denmark
More information about the Danish registries can be obtained by contacting Ulla Werlauff from the National Danish Rehabilitation Centre for Neuromuscular Diseases.
More Info
Email
Call +45 89482222
Website rcfm.dk
NMD registry - New Zealand
The NZ NMD Registry covers all neuromuscular disorders that it's primary sponsor, MDANZ, supports.
More Info
Email
Website www.mda.org.nz
DMD Registry - Algeria
An Algerian NMD Patient Registry is open, and patients with DMD/BMD or SMA, or their families, can find more information about this registry on the website: http://shifadz.wix.com/asso
More Info
Email
Website http://shifadz.wix.com/asso
DMD registry - Argentina
The Argentinian DMD registry is now active. For more information please contact Soledad Monges.
More Info
Email
Call 541148011327
SMA Registry - Argentina
The Argentinian SMA registry is now active. For more information please contact Soledad Monges.
More Info
Email
Call 541148011327
DMD registry - Australia
In Australia, Duchenne Foundation Australia, in conjunction with the Muscular Dystrophy Association, the Muscular Dystrophy Foundation, other support groups and affected families, made representations to state and federal politicians and health ministers to establish a national registry.
More Info
Email
Call +61 892226842
DMD registry - Austria
The Austrian patient registry for Duchenne Musucular Dystrophy is located at the Ludwig-Maximilians University in Munich and co-sponsored by the German Duchenne Parents Project benni&co. The investigator in charge is Dr. Maggie Walter and you can contact the registry here if you have any questions. Patients with DMD can register online at www.treat-nmd.de.
DMD registry - Belarus
The Belarusian Patient Registries for SMA and DMD are currently in the planning stages. Efforts are underway to set them up in a collaboration between doctors and the NMD section of the patient organization Belapdiimi.
DMD registry - Brazil
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.
DMD Registry - Bulgaria
The Bulgarian patient registry for Duchenne/Becker Musucular Dystrophy and Spinal Muscular Atrophy is located at University Hospital Alexandrovska, Clinic of Neurology in Sofia.
More Info
Email
Call +359888448020
DMD registry - Canada
The Canadian Neuromuscular Disease Registry (CNDR) is a Canada-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from patients across the country to improve the understanding of neuromuscular disease and accelerate the development of new therapies.
DMD registry - China
The Chinese Genetic Disease Registry (CGDR) is a China-wide registry of people diagnosed with a genetic disease, especially for DMD/BMD and SMA. It collects important medical information from patients across the country to improve the understanding of genetic disease and accelerate the development of new therapies. CGDR is located at General Hospital of Chinese Armed Police Force in Beijing, which was started in September 2012. For more information please visit the CGDR website at www.dmd-registry.com or contact the CGDR National Office at [email protected].
More Info
Email
Call 49-15904345645
DMD registry - Croatia
Croatian national registry of patients with Duchenne and Becker Muscular Dystrophy and Spinal Muscular Atrophy type I, II, III and IV is now active.
The registry has been developed by the Referral Centre for paediatric neuromuscular diseases of Croatian Ministry of health - at the Division of paediatric neurology, University Hospital Centre Zagreb (KBC Zagreb), University of Zagreb Medical School in cooperation with Croatian Alliance of Muscular Dystrophy Associations and other clinical centres in Croatia.
More Info
Email
Website www.hddn.hlz.hr
More Info
Email
NMD registry - Cyprus
The Cypriot Neuromuscular Diseases (NMDcy) Registry is a Cypriot-wide registry of patients diagnosed with neuromuscular diseases. The aim of the NMDcy is the collection of important medical information from patients across the country, in order to enhance the quality of life of the patients by providing information regarding neuromuscular diseases in general and about ongoing clinical trials. The NMDcy runs in association with the Cyprus Muscular Dystrophy Association.
Dr. Nikoletta Nikoleko is the supervisor of the NMDcy as well as the curator of the DMD registry and can be contacted by e-mail at [email protected], by phone- +35799520124, or address- Institute of Medical Rehabilitation, 29 Digeni Akrita Ave, flat 21, Nicosia Cyprus.
For more information or to register visit: http://nmdcy.org/
More Info
Email
Call +35 799 520124
Website nmdcy.org
DMD registry - Czech Republic
The Czech and Slovak patient registry for Duchenne/Becker Muscular Dystrophy is located at the Masaryk University in Brno, where it was developed by the Institute of Biostatistics and Analyses, and is sponsored by the Czech Duchenne Parent Project.
SMA registry - Czech Republic
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 Info
Email
NMD Registry (DMD, BMD, FSHD, LGMD, GNE, DM) - Egypt
The Egyptian NMD registry is now open for registrations from DMD/BMD, LGMD, GNE, DM, CMD and FSHD patients in Egypt. Registrations from SMA patients will be possible in the near future. We also welcome registrations from patients with these conditions in other Arab countries. The registry aims to improve understanding about neuromuscular diseases, standards of care and treatment.
The registry is maintained by Egypt Air Hospital. For more information please contact Dr. Rasha El Sherif at [email protected] or by telephone on +202 010017580.
More Info
Email
DMD registry - Estonia
Estonia is planning to set up TREAT-NMD patient registries for DMD/BMD and SMA.
For more information, please contact Dr Ilona Lind , who is currently based at Children´s Clinic of Tartu University Hospital.
DMD registry - Finland
The Finnish NMD registry for DMD and SMA patients is maintained by The Finnish Neuromuscular Disorders Association in collaboration with Finnish universities.
If you would like more information, then please conact:
+358-44 736 1030 (from abroad) or 044 736 1030 (inside Finland)
More Info
Email
Call +35822739700
DMD registry - France
The French registry of patients with a dystrophinopathy (Duchenne or Becker Musucular Dystrophy) is hosted at the Laboratory of Molecular Genetics, Inserm U827 (Director: Pr Mireille Claustres) in Montpellier and co-sponsored by the French Association for neuromuscular diseases (AFM).
DMD registry - Germany
The German patient registry for Duchenne Musucular Dystrophy is located at the Ludwig-Maximilians University in Munich and co-sponsored by the German Duchenne Parents Project benni&co.
Hellenic Neuromuscular Disorders Registry
The Registry for DMD/SMA patients registry is currently under reconstruction. The Department of Medical Genetics, curator of the former HNDR(Hellenic Neuromuscular Disorders Registry), is currently in the process of following the current EU legislation for sensitive data processing for academic institutions in Greece. We hope to be able to activate the Hellenic registry as soon as possible.
Email
Call 00302107795553
Website www.hndr.gr
DMD Registry - Hungary
The Hungarian patient registry for Duchenne Muscular Dystrophy is located at the Department of Molecular Genetics and Diagnostics of the National Institue of Environmental Health.
The registration form, the declaration of agreement and other related documents are available on the website http://izomcentrum.eu or via email or they can be requested by phone +36 14761361.
More Info
Email
Call +3614761361
Website http://izomcentrum.eu
SMA Registry - Hungary
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.
More Info
Email
Call 362151380
Muscular Dystrophy Association registry - India
Dr V. Viswanathan, Consultant Paediatric Neurologist at the Kanchi Kamakoti CHILDS Trust Hospital, has already established a registry with support of the Indian MDA and this is accepting patients.
For further details please contact Dr Viswanathan.
More Info
Email
Call 9840094882
DMD Registry - Iran
The Iranian DMD/BMD Registry, IDBR, is a national registry for individuals with DMD/BMD conditions. The IDBR began its work with support of Molecular Medicine Network by collecting personal clinical and genetic information in 2010 from individuals with Duchenne or Becker Muscular Dystrophies.
More Info
Email
Call UK - Sohrab Kavir - 0044 7766 356685
Website www.dystrophy.ir/en/
DMD registry - Israel
We invite you to participate and register for the national database of the State of Israel in order that your child can take part in future research and allow researchers and pharmaceutical companies around the world keep up the possibilities of existing research in the country.
More Info
Call 972545535563
Website www.littlesteps.org.il
More Info
Email
More Info
Email
Call +39 06 66182811