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.
National registries for DMD
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
The Argentinian DMD registry is now active. For more information please contact Soledad Monges.
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.
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.
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/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 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.
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 firstname.lastname@example.org.
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.
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@example.com, 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/
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.
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.
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 firstname.lastname@example.org or by telephone on +202 010017580.
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.
The Finnish NMD registry for DMD and SMA patients is maintained by The Finnish Neuromuscular Disorders Association in collaboration with Finnish universities.
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).
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.
The Hellenic Neuromuscular Disorders Registry (HNDR) is a Hellenic-wide registry of patients diagnosed with a neuromuscular disease. HNDR is hosted at the Athens University Department of Medical Genetics (Chairman: Prof. E Kanavakis) and is co-sponsored by MDA Hellas. HNDR for Duchenne/Becker muscular dystrophies and SMA, is now active and open for registrations.
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.
In India there is currently one patient registry that is recruiting patients and another registry that is under construction.
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.
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.
There are two patient registries in Italy for patients with DMD
1) Italian DMD/BMD registry
2) Italian Registry of Persons affected by NeuroMuscular Diseases
The Japanese DMD registry (Remudy; REgistry of MUscular Dystrophy) is located at the National center of Neurology and Psychiatry in Tokyo.
The Latvian Registry for DMD and SMA is in the planning phase. More information will be made available in due course.
The Lithuanian registry for DMD and SMA patients is in the planning phase. More information will be made available in due course.
The Malaysian registry for DMD and SMA is in the planning phase. More information will be made available in due course.
The UPA! Duchenne Registry serving Latin America and Spanish speaking community patients is managed and supported by the association UPA! cura Duchenne.
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.
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 Norwegian registry for DMD and SMA is in under construction. More information will be made available in due course.
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.
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”.
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 Association.
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.
At the moment there are two independent databases - one in Moscow and one in St Petersburg. In the future, a combination of these two databases is planned.
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 professional report.
Register slovenskih otrok z živčno-mišičnimi obolenji
Registry of Slovenian children with neuromuscular diseases
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 females who live in Spain.
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 Lindvall .
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.
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.
The UK DMD registry is located at www.dmdregistry.org where parents and those living with DMD and BMD can register online.
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).
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.