National patient registries for DMD

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.

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 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.

The Belgian patient registry for Duchenne/Becker muscular dystrophy is located at the Scientific Institute of Public Health, Epidemiology Section, in Brussels.

DMD/BMD and SMA patient registries are being planned to be set up 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 dmd2012@126.com.

Croatian national registry of patients with Duchenne and Becker Muscular Dystrophy and Spinal Muscular Atrophy type I, II, III and IV is currently under construction.

The registry is being 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 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.

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 Hungarian patient registry for Duchenne Muscular Dystrophy is located at the Department of Molecular Genetics and Diagnostics of the National Institue of Environmental Health.

Two DMD patient registries are being set up in India.
 
Dr V. Viswanathan, Consultant Paediatric Neurologist at the Kanchi Kamakoti CHILDS Trust Hospital, has established a registry with support of the Indian MDA.

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.

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 National center of Neurology and Psychiatry in Tokyo.

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).

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

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 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 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.

The DMD/BMD Patients' Registry is an online database for Romanian patients diagnosed with Duchenne / Becker Muscular Dystrophy.

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 from Moscow and SpB is planned.

The Serbian patient registry for Duchenne Muscular Dystrophy (DMD) is under construction  at the moment. The Duchenne registry is located at the Clinic for Pediatric and Adolescent  Neurology and Psychiatry, Medical Faculty, University of Belgrade and is going to be in form of professional report.

The Spanish registry of DMD patients is being prepared by collaboration between different professionals from neuropediatrics, neurology and genetics.

A test version of the register/database, based at NKO in Lund, has just been completed. The register will be based on professional report.

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.

Ukrainian DMD register started its work in July 2009 and in September 2009 had its first patient whose mandatory items profile complies with global TREAT-NMD register requirements.

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

There are two patient registries in the USA for patients with DMD.
The United Dystrophinopathy Project is located at the University of Utah.
The DuchenneConnect Patient Registry for the United States is managed by Parent Project Muscular Dystrophy (PPMD), United States.

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.