MTM and CNM 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

 

The Myotubular and Centronuclear Myopathy Patient Registry
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
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
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
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
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

 
 
12 Apr 2017