MTM and CNM Registries
Patient Registries
The 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.
MDA India – NMD Registry
Dr V. Viswanathan, Consultant Paediatric Neurologist at the Kanchi Kamakoti CHILDS Trust Hospital, has already established a registry with support of the Indian MDA and this is accepting patients.For …
New Zealand Neuromuscular Disease Registry
The NZ NMD Registry covers all neuromuscular disorders that it’s primary sponsor, MDANZ, supports.
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 …
KUKAS
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 D …
Family Registry for Centronuclear and Myotubular Myopathies
This global map representing the ‘Family Registry for Centronuclear and Myotubular Myopathies’ is an international patient registry collecting families contact information who’s lives have been afflic …
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 …
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 …
