There are several other registries relevant to myotubular and centronuclear myopathy which also have global coverage, and it can be hard to know which one to join. This choice is up to you; and if you are eligible, you can join as many registries as you like. We all work together to achieve our goals.
Whether you join one registry or all of them, it is very important that you complete all the information fully and keep it up to date when prompted. This helps us to understand your data correctly and avoid double-counting if we do research together in future.
You are now on the website for the Myotubular and Centronuclear Myopathy Patient Registry.
You can use the links below to learn more about the other registries available for these conditions, and whether you are eligible to join:
- Congenital Muscle Disease International Registry
- International Family Registry for Centronuclear and Myotubular Myopathies
- Registry for RYR-1-related diseases
Resources on this website:
- Tips on safe data sharing; Are you protecting your personal data and being a ‘smart’ research participant?
Resources on other websites:
- Understanding the drug discovery process (from the website Compound Interest)
- Basic overview of the FDA (USA) drug approval process (from the MTM-CNM Family Connection)
- MTM & CNM Factsheet (from Muscular Dystrophy UK)
Patient organisations and support groups:
- Joshua Frase Foundation (USA)
- MDUK (UK)
- MTM-CNM Family Connection (USA)
- Miotubular Warriors (Argentina)
- FIMM - Famiglia Italiana Miopatia Miotubulare e Centronucleare ODV-ETS (Italy)
- Association Suisse Romande Intervenant contre les Maladies neuroMusculaires (Switzerland)
- Myotubular Trust (UK)
- Spierziekten Nederland (Netherlands)
- Deutsche Gesellschaft für Muskelkranke (Germany)
- Lihastautiliitto | Tukea lihassairaille ihmisille (Finland)
- APN | Associação Portuguesa de Neuromusculares (Portugal)
- Asociación BENE (Spain)
- Muscular Dystrophy Australia (Australia)
- Muscular Dystrophy Foundation (South Africa)
- Where There’s A Will There’s A Cure (USA)
- ZNM – Zusammen Stark! (Germany)