Limb-Girdle Muscular Dystrophy Type 2A Patient Registry

Information

LGMD2A Global Patient Registry

The LGMD2A Patient Registry is an international registry that collects genetic and clinical data about persons affected by mutations in the CAPN3 (Calpain 3) gene, namely Limb Girdle Muscular Dystrophy type 2A (LGMD2A) which is also known as Calpainopathy.

Previously, no database existed of individuals affected by calpainopathy. It is very important to assemble a patient registry so that treatments can be developed.

This registry helps to:

  • Facilitate better estimates of the number of people living with LGMD2A, and draw attention to the cause
  • Allow researchers to better understand the progression and manifestations of the disease, and locate subjects for clinical trials
  • Help with fundraising and awareness efforts
Registry LocationInternational - available to Australians
Registry ParticipationVoluntary
Registry Contact

E: contact@lgmd2a.org

Adding New Patients to Registry

How to join the registry

If you or a family member suffers from calpain-3 deficiency, please register yourself on the website. If you know of anyone else with the disease, please refer them to this website and ask them to register as well.

No personally identifiable information will be shared with researchers without your prior consent.

Please see the website for more information

www.lgmd2a.org

Share This