MTM and CNM Registries
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
The Myotubular and Centronuclear Myopathy 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 registry also collects female carriers of x-linked MTM, especially if they have manifesting symptoms.
The registry will:
- Help identify patients for relevant clinical trials as they become available
- Encourage further research into MTM and CNM
- Provide researchers with specific patient information to support their research
- Assist doctors and other health professionals by providing them with up-to-date information on managing MTM and CNM, to help them deliver better standards of care for their patients.
More Info
Email
Call +441912418640
Website www.mtmcnmregistry.org
DMD registry - Japan
The Japanese DMD registry (Remudy; REgistry of MUscular Dystrophy) is located at the National center of Neurology and Psychiatry in Tokyo.
More Info
Email
Call +81-42-346-2309
DMD Registry - Romania
There are two DMD registries in Romania for patients diagnosed with Duchenne / Becker Muscular Dystrophy.
One registry is run by the patient organisation Parent Project Romania and the person in charge of the registry is Isabela Tudorache. The other registry is run by Dana Craiu, Carol Davila University of Medicine.
More Info
Email
Call +40 745 007 589
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
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 afflicted with CNM/MTM. Upon consent, this data collection will be used for research initiatives as we unlock the mysteries of CNM/MTM. Please know if you have registered in other registries, you are welcome to register here as well as we build a visual representation of our community using geotagging.
More Info
Website www.joshuafrase.org