Duchenne/Becker muscular dystrophy
There are many registries that have been set-up across the world that specifically collect data from patients with DMD/BMD.
Some of this data comprises of an internationally agreed mandatory dataset which sets out the information that all national registries should collect in order for their data to be directly comparable in the TREAT-NMD Global Registry. The Global DMD Registry collects data from over 30 national registries which relates to over 13,000 patients.
If you are a patient (or parent/guardian of a patient) with DMD and would like to register in a DMD Registry then you should do this via the registry in your country if one is available.
Patient Registries
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
DMD registry – Argentina
The Argentinian DMD registry is now active. For more information please contact Soledad Monges.
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 …
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 inves …
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 organi …
NMD Brazilian 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 Ci …
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.
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 countr …
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 …
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 Cent …
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 informatio …
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 …
The National Rehabilitation Centre for Neuromuscular Diseases
More information about the Danish registries can be obtained by contacting Ulla Werlauff from the National Danish Rehabilitation Centre for Neuromuscular Diseases.
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 welcom …
EGYPT PED-NMD – Pediatric NMD Registry (BMD, DMD, SMA) – Egypt
EGYPT PED-NMD: National Registry for Egyptian Pediatric Treating Neuromuscular Diseases Data base for Egyptian patients with SMA as a part of National Registry for Egyptian Pediatric Treating Neuromus …
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 Hos …
Suomen Lihastautirekisteri – The Finnish Patient Registry
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 …
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 Mon …
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 …
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 for …
MDA India – NMD Registry
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 …
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 a …
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 …
Italian Neuromuscular Registry
Register of patients with neuromuscular diseases The Registry collects personal, genetic and clinical data of patients suffering from neuromuscular diseases and arises from the need to order and updat …
Remudy(REgistry of MUscular DYstrophy) – Japan
The Japanese DMD registry (Remudy; REgistry of MUscular Dystrophy) is located at the National center of Neurology and Psychiatry in Tokyo.
NMS datu kolekcija (Latvian NMD Registry)
For information on the Latvian DMD registry please contact Ieva Micule or Signe Setlere.
Lebanese Neuromuscular Disease Registry
The Lebanese Neuromuscular Disease Registry is managed by L.A.N.D. (Lebanese Association for Neuromuscular Diseases) a support group that will spread awareness and support patients and families affect …
DMD registry – Lithuania
The Lithuanian registry for DMD and SMA patients is in the planning phase. More information will be made available in due course.
DMD Registry – Macedonia
The Children’s Hospital Neurology Department in Skopje, Macedonia, is planning to set up TREAT-NMD patient registries for DMD and SMA.
DMD registry – Malaysia
The Malaysian registry for DMD and SMA is in the planning phase. More information will be made available in due course.
DMD registry – Mexico
The UPA! Duchenne Registry serving Latin America and Spanish speaking community patients is managed and supported by the association UPA! cura Duchenne.
New Zealand Neuromuscular Disease Registry
The NZ NMD Registry covers all neuromuscular disorders that it’s primary sponsor, MDANZ, supports.
DMD registry – Norway
The Norwegian registry for DMD and SMA is in under construction. More information will be made available in due course.
Muscular Dystrophy Registry of Pakistan
The Muscular Dystrophy Registry of Pakistan has been setup with a goal to improve outcomes and quality of life in patients with muscular dystrophies and related neuromuscular disorders The registry is …
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 Pe …
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 neuromu …
DMD registry – Portugal
The Portuguese patient registry for Duchenne Muscular Dystrophy is located at the Centro de Genética Médica Jacinto Magalhães, INSA, in Porto, and is supported by the Portuguese Neuromuscular Patients …
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 charg …
DMD registry – Serbia
The Serbian patient registry for Duchenne Muscular Dystrophy (DMD) is located at the Clinic for Pediatric and Adolescent Neurology and Psychiatry, Medical Faculty, University of Belgrade and is profe …
Registry of Slovenian Children with Neuromuscular Diseases
Register slovenskih otrok z živčno-mišičnimi obolenji Registry of Slovenian children with neuromuscular diseases
DMD Registry – Spain
Spanish DMD Patient Registry is a project created and led by Duchenne Parent Project Spain (DPPE) in order to have a database of patients diagnosed with Duchenne Muscular Dystrophy/Becker and carrier …
DMD registry – Sudan
The DMD registry for patients living in Sudan is now active.
Neuromuskulära sjukdomar i Sverige (Neuromuscular Disorders in Sweden)
This registry is based on professional reporting system and now includes SMA, DM1, congenital myopathies, congenital muscular dystrophies, and LGMD. For further information, please contact Björn Lindv …
Swiss Registry for Neuromuscular Disorders
The Swiss Registry for Neuromuscular Disorders collects medical information about persons with a neuromuscular disease. For example, the registry collects information about people affected by spinal m …
KUKAS
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 D …
DMD Registry – Ukraine
The Ukrainian DMD registry started in July 2009 and in September 2009 had its first patient whose mandatory items complies with global the TREAT-NMD global registry requirements.
DMD Registry (UK Duchenne Muscular Dystrophy 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 Mu …
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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 (UD …
DMD registry – Venezuela
The National Register of Venezuela for patients with Duchenne Muscular Dystrophy is administered and funded by UPA! cura Duchenne in collaboration with the Children Foundation Duchenne de Venezuela.
Please note 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 DMD Registry.
