A recently opened global registry is seeking people with the type 2A form of limb-girdle muscular dystrophy (LGMD2A), which results from a deficiency of the calpain 3 protein. The LGMD2A Patient Registry is designed to be filled out online. It asks for basic demographic information and data about symptoms, diagnosis, functional level, equipment and treatments, to be entered by a person with LGMD2A or a family member. Its goals are to:o improve the accuracy of the estimated number of people with LGMD2A;o draw attention to the disorder;o allow researchers to better understand the progression and manifestations of the disease; ando help researchers locate participants for clinical trials.The Coalition to Cure Calpain 3, which oversees this registry, notes that confidentiality will be protected, and individually identifiable information only will be used or disclosed to others if specific consent is given. This is an international database open to patients living in all countries. For more information or for researchers wishing to access the database, please e-mail contact@lgmd2a.org
