Myotonic dystrophy

Myotonic dystrophy

There are a number of patient registries across the world that collect data on patients with myotonic dystrophy.

A workshop was held in 2009 to establish a core dataset that all registries should collect in order for their data to be comparable (see the links section on the left). As a result of this, an international registry that collates information from the national registries is currently in the process of being established. If you are a patient (or parent of a patient) with myotonic dystrophy and would like to register in a patient registry, you should do this via the registry in your country if one is available.

National patient registries

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

 

DM1 registry - Australia
DM1 registry - Australia

The Australian Myotonic Dystrophy (DM1) Registry has been developed to collate a patient's DM1 gene sequence and clinical information about their disease. The Registry provides an important enabling tool for clinicians and clinical trial sponsors to quickly identify patients suitable for each study, particularly those therapeutic strategies that target specific genetic defects.

Please contact Hugh Dawkins for further details.

More Info
Email

Call +61 892226842
Website nmdregistry.com.au

 

DM registry - Bulgaria
DM 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

 

DM registry - Canada
DM 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.

More Info

 

DM registry - Czech Republic
DM registry - Czech Republic

The Czech patient registry Myotonic Dystrophy is located at the Masaryk University in Brno, where it was developed by the Institute of Biostatistics and Analyses.

More Info

 

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

 

DM1 registry - France
DM1 registry - France

The French Registry for Myotonic Dystrophy is a national initiative in France that specialists caring for myotonic dystrophy patients contribute to. It is purely based on professional report during clinical consultations.

www.dmscope.fr

More Info
Email

Call 01 45 17 80 93
Website website

 

DM 1 & 2 registry - Germany
DM 1 & 2 registry - Germany

As part of the international TREAT-NMD initiative, a national self-report and professional-report registry for all German DM (1 & 2) patients is being established in a collaboration between the expert neuromuscular clinical centres, MD-Net Germany and the Deutsche Gesellschaft für Muskelkranke.

More Info

 

DM registry - Japan
DM registry - Japan

As part of the international TREAT-NMD initiative, a national self-report and professional-report registry for all Japanese DM patients is established in collaboration between Osaka University, National Center for Neurology and Psychiatry (NCNP) and expert neuromuscular clinical centers. The registry is organized as a part of the Registry of Muscular Dystrophy (Remudy) in Japan.

More Info
Email

Website www.remudy.jp

 

DM1 & DM2 registry - Poland
DM1 & DM2 registry - Poland

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”.

More Info

 

DM registry - Serbia
DM registry - Serbia

Serbian DM registry was founded in November 2008 at the Neurology Clinic, Clinical Centre of Serbia, School of Medicine, University of Belgrade. It has been named Akhenaten after a pharaoh of Egypt who probably suffered from myotonic dystrophy. The founder of the registry and principal investigator is Prof. Vidosava Rakocevic Stojanovic and the main curator of the registry is Dr. Stojan Peric (stojanperic@gmail.com)

More Info
Email

Website www.drustvoneurologasrbije.org

 

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

 

DM1 registry - United Kingdom
DM1 registry - United Kingdom

As part of the international TREAT-NMD initiative, a national registry for all UK DM1 patients has been established in collaboration between the expert clinical centres, the MDUK and the Myotonic Dystrophy Support Group.

The UK Myotonic Dystrophy Patient Registry is being run from Newcastle University by Prof Hanns Lochmüller. The primary goals of the Registry are to facilitate clinical research in Myotonic dystrophy and to allow clinicians and researchers to better understand the condition.

For more information see www.dm-registry.org/uk or contact the Registry Curator for further details.

An information leaflet has been produced and can be downloaded here.

More Info

 

DM1 & 2 registry - United States of America
DM1 & 2 registry - United States of America

The Myotonic Dystrophy Family Registry

The Myotonic Dystrophy Family Registry is a web-based registry created specifically for individuals with myotonic dystrophy (DM1 and DM2). MDFR is unique in that it will not only help researchers find new, effective treatments and identify possible participants for upcoming clinical trials and research studies, but will also allow anyone who is registered to have access to the collected data (de-identified only), from academic and pharmaceutical researchers to individuals or families living with DM.

More Info

 

DM1 registry - United States of America
DM1 registry - United States of America

The National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy is based at the University of Rochester and funded by the National Institutes of Health.

More Info

 

Please note there is no benefit to you in registering in more than one registry.

 
12 Apr 2017