A recently opened global registry— a database of patient information — is seeking people with the type 2A form of limb-girdle muscular dystrophy (LGMD2A), a form of LGMD that 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:
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.
For questions or to find out how you can access the database as a researcher, send an email to firstname.lastname@example.org.