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.
Patient Registries
Austrian NMD Registry
The German/Austrian Neuromuscular patient registry is located at the the Friedrich-Baur-Instiute, LMU Klinikum Munich, Germany. The investigator in charge is Prof. Maggie Walter (or Prof Benedikt Sch …
Belgian Neuromuscular Disease Registry (BNMDR) – Belgium
Le registre belge des maladies neuromusculaires (BNMDR) a été créé en 2008. Il est géré par Sciensano et collecte les données des 7 centres de référence pour les maladies neuromusculaires. Ses objecti …
Bulgarian Patient Registry for Neuromuscular Diseases
The Bulgarian patient registry is located at University Hospital Alexandrovska, Clinic of Neurology in Sofia. The investigator in charge is Prof. Dr. Ivailo Tournev. You can contact him at itournev@emhpf.org or tel.+359 2 9230670. Patients with DMD/BMD and SMA are able to get information on the registry and forms also online at the site of [...]
Canadian Neuromuscular Disease Registry
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 …
Croatian NMD Registry for Pediatrics
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 Cen …
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.
The Danish 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.
Egyptian Neuromuscular Registry
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 Egypt
EGYPT PED-NMD: National Registry for Egyptian Pediatric Treating Neuromuscular Diseases Database for Egyptian NMD patients as a part of National Registry for Egyptian Pediatric Treating Neuromuscular …
DM 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 cl …
German NMD Registry
The German/Austrian Neuromuscular patient registry is located at the the Friedrich-Baur-Instiute, LMU Klinikum Munich, Germany. The investigator in charge is Prof. Maggie Walter (or Prof Benedikt Sch …
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
The NMS Datu Kolekcija was created in 2014 and is based in Riga, Latvia. The registry captures information on any patients with DMD, DM, FSHD, LGMD, SMA and rare neuromuscular diseases. For further in …
New Zealand Neuromuscular Disease Registry (Punaha Io Neurogenetic Research Bank)
The New Zealand Neurogenetic Registry & Biobank covers all neuromuscular disorders.
Polish Registry of Patients with Neuromuscular Diseases
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 …
Serbian Registry for Myotonic Dystrophies (Akhenaten)
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 wh …
Registry of Slovenian Children with Neuromuscular Diseases
Register slovenskih otrok z živčno-mišičnimi obolenji Registry of Slovenian children with neuromuscular diseases
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 …
Turkish NMD Registry – KUKAS
This is a registry system regarding Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA), the most commonly encountered neuromuscular disorders during the childhood period; to ensure a …
UK Myotonic Dystrophy (DM) Patient Registry
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 Dyst …
USA National Registry for Myotonic Dystrophy and Facioscapulohumeral Muscular Dystrophy
The National Registry of Myotonic Dystrophy and Facioscapulohumeral Muscular DystrophyThis registry, which is funded by the US National Institutes of Health and based at the University of Rochester, h …
Global Myotonic Dystrophy Family Registry
The Myotonic Dystrophy Family RegistryThe Myotonic Dystrophy Family Registry is a web-based registry created specifically for individuals with myotonic dystrophy (DM1 and DM2). MDFR is unique in that …
Please note there is no benefit to you in registering in more than one registry.