Emory University is partnering with a consortium of LGMD disease foundations (LGMD-diagnosis.org
). Their goal is to do diagnostic sequencing research for patients suspected of having LGMD or other muscular dystrophy with similar clinical presentations.
Physicians may apply online using ALDA
(Automated LGMD Diagnostic Assistant) to determine their patient's eligibility for the program. Eligible patients are asked to complete a questionnaire, provide consent, and send in a saliva sample for sequencing of 35 genes known to be involved in various forms of muscular dystrophy.
The sequencing is done at no cost to the patient. The patient will not be obligated or automatically enrolled as a subject in any program outside of the LGMD-diagnosis.org
program. Patients with diseases covered by an existing LGMD disease organization may be contacted by that organization with information about their services.
Currently only individuals who live in the U.S. are eligible for this no-cost genetic sequencing program. For more information about this program go to www.lgmd-diagnosis.org
Note: AANEM is not directly involved in this research study.