International LGMD2A Patient Registry

Clinical studies and trials involve research using human volunteers (also called participants) that is intended to add to medical knowledge. Developing new medicines and treatments is a lengthy and complex process, relying heavily on volunteer participation to help with better understanding of the disease process as well as to evaluate potential therapies for safety and effectiveness in clinical trials.

COALITION TO CURE CALPAIN 3 is proud to have established the International “LGMD2A PATIENT REGISTRY.” This registry is important as it:
• Facilitates a better estimates of the number of people living with LGMD2A/Calpainopathy, and draws attention to the need for a treatment and cure.
• Allows researchers to better understand the progression and manifestations of the disease, and locates participants for clinical trials – when available.
• Helps with fundraising and awareness efforts.

Celebration Therefore, if you or a family member suffers from calpain-3 deficiency/ LGMD2A, please register at: www.LGMD2A.org . If you know of anyone else with the disease, please refer them to this web site and ask them to register as well.

* * * Once registered, you will receive e-mail updates on research progress and clinical trial opportunities. No personally identifiable information will be shared with researchers without your prior consent. This is an international database open to patients living in ALL countries and is open to ALL ages.

Together we are working at “Overcoming Weakness With Strength!”

International LGMD2A Patient Registry