MTM and CNM Registries
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 …
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 …
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.
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 …
New Zealand Neuromuscular Disease Registry (Punaha Io Neurogenetic Research Bank)
The New Zealand Neurogenetic Registry & Biobank covers all neuromuscular disorders.
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 …
CMDIR: the CMD International Registry
The Congenital Muscular Dystrophy International Registry (CMDIR) was created by the patient advocacy group Cure CMD to identify the global CMD population for the purpose of raising awareness, improvin …
The Myotubular and Centronuclear Myopathy (MTM & CNM) Patient Registry
The MTM and CNM Patient Registry is an international database that collects information on all patients with an MTM or CNM diagnosis which has been confirmed via genetic testing or muscle biopsy. The …