Purpose of the LGMD-2A Global Patient Registry

Currently, no database exists of individuals affected by calpainopathy. It is very important to assemble a patient registry so that treatments can be developed. A patient registry will:

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

Therefore, if you or a family member suffers from calpain-3 deficiency, please register yourself here. 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. If you have any questions, or if you are a researcher who wishes to access our database, please e-mail This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Thank you!

Proceed to Patient Registration form

Research Study Opportunity
Updated March 2012

Xiomara Q. Rosales, M.D. and Jerry Mendell, M.D. at the Center for Gene Therapy at Ohio State University are recruiting patients with confirmed Calpain 3 mutations to participate in a cardiac MRI study and immunology studies to better understand the mechanism of LGMD2A. There are four slots open for this study. When these slots are filled, the study will begin. The study will cover hotel accommodations through the Welcome Center and airfare (economy class) for patients coming from long distances, or mileage reimbursement if they drive. No other expenses will be covered (food, taxis, etc. will be at patient’s own expense).

Dr. Rosales is also interested in adding people with confirmed Calpain 3 mutations to her research database for future Calpain 3 studies. If you are interested in participating in the cardiac MRI and immunology study or in having your name added to Dr. Rosales’ research database for future Calpain 3 studies, please contact her by phone at 614-722-6961 or by email at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .