LGMD2A Registry Seeks Participants

A Web-based database invites participation by people with the type 2A (calpain 3-deficient) form of limb-girdle muscular dystrophy

Article Highlights:
  • The Coalition to Cure Calpain 3 is overseeing an online registry of people with LGMD2A, the calpain 3-deficient form of LGMD.
  • The registry is designed to enhance awareness and improve understanding of LGMD2A, as well as help researchers find participants for clinical trials.
  • Data that identifies individual participants will be released only with their consent.
by Margaret Wahl on February 4, 2013 - 5:00am

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:

  • improve the accuracy of the estimated number of people with LGMD2A;
  • draw attention to the disorder;
  • allow researchers to better understand the progression and manifestations of the disease; and
  • 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.

For questions or to find out how you can access the database as a researcher, send an email to contact@lgmd2a.org.

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