National BMD registries

Many registries created by Duchenne muscular dystrophy patient organizations also collect information on people affected by Becker Muscular Dystrophy and these can be found listed below.

To quickly find your national registry, start typing your country name into the box below.

NMD registry - New Zealand
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
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 - Brazil
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.

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DMD Registry - Bulgaria
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 - China
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 dmd2012@126.com.

More Info
Email

Call 49-15904345645

 

DMD registry - Croatia
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

 

DMD Registry - Croatia

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Email

 

DMD registry - Czech Republic
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.

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SMA registry - Czech Republic
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
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 dr.rashaelsherif@gmail.com or by telephone on +202 010017580.

More Info
Email

 

DMD registry - Estonia
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.

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DMD registry - Finland
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
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).

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Hellenic Neuromuscular Disorders Registry
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
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

 

Muscular Dystrophy Association registry - India
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
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
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

 

DMD Regsitry - Italy

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Email

 

DMD/BMD Registry - Italy

More Info
Email

Call +39 06 66182811

 

DMD registry - Japan
DMD registry - Japan

The Japanese DMD registry  (Remudy; REgistry of MUscular Dystrophy)  is located at the National center of Neurology and Psychiatry in Tokyo.

More Info
Email

Call +81-42-346-2309

 

DMD Registry - Netherlands
DMD Registry - Netherlands

The Dutch patient registry for Duchenne and Becker Musucular Dystrophy is located at the University Medical Centre in Leiden. The investigator in charge is Janneke van den Bergen.

More Info
Email

Call +31 (0)71-5265240

 

DMD registry - New Zealand
DMD registry - New Zealand

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).

Please contact registry curator Miriam Rodrigues or visit the registry website for further details.

More Info

Website www.nmdregistry.co.nz

 

DMD Registry - Peru
DMD Registry - Peru

The National DMD and other NMD Registry for Peruvian patients is managed and supported by the Collaboration Network named UPA! Red Hispana in collaboration with Asociación de Distrofia Muscular del Perú.

More Info
Email

Call 511-980654809

 

DMD registry - Poland
DMD registry - Poland

The Polish Registry of Patients with Neuromuscular Diseases was 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”.

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DMD Registry - Romania
DMD Registry - Romania

There are two DMD registries in Romania for patients diagnosed with Duchenne / Becker Muscular Dystrophy.

One registry is run by the patient organisation Parent Project Romania and the person in charge of the registry is Isabela Tudorache. The other registry is run by Dana Craiu, Carol Davila University of Medicine.

More Info
Email

Call +40 745 007 589

 

SMA Registry - Russian

MDA

More Info
Email

Call 79163358974

 

Registry of Slovenian Children with Neuromuscular Diseases
Registry of Slovenian Children with Neuromuscular Diseases

Register slovenskih otrok z živčno-mišičnimi obolenji

Registry of Slovenian children with neuromuscular diseases

More Info

Website www.pednevro.pedkl.si

 

Treat-DMD Registry - Spain

More Info
Email

Call 34955012779

 

DMD Registry - Turkey
DMD Registry - Turkey

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.

More Info
Email

Call 0312 3052525 / 179
Website www.kukas.info

 

UK DMD Registry

The UK Duchenne Muscular Dystrophy Registry (The Registry) is funded and managed by Action Duchenne.

The Registry acts as a database for all patients who have been diagnosed with Duchenne or Becker Muscular Dystrophy and female carriers. Participants are required to give consent when registering and to complete a Medical Release Form (consent form) to enable Action Duchenne to contact clinicians and geneticists for medical and genetic information.

Registration and access is only authorised to people who are registered with a clinician in their country of residence because they have been diagnosed as having either Duchenne or Becker Muscular Dystrophy, are a carrier of a variant in the Dystrophin gene or are the parent or guardian of a child with a variant in the Dystrophin gene.

To register online: https://www.dmdregistry.org/login

More Info
Email

Call +44 (0)20 7250 8240
Website

 

DMD registry - United Kingdom
DMD registry - United Kingdom

The UK DMD registry is located at www.dmdregistry.org where parents and those living with DMD and BMD can register online.

More Info

 

The Duchenne Registry
The Duchenne Registry

There are two patient registries in the USA for patients with DMD. The DuchenneConnect Patient Registry, managed by Parent Project Muscular Dystrophy (PPMD) and the United Dystrophinopathy Project (UDP).

More Info
Email

Call 18885208675
Website

 
 
12 Apr 2017