Muscular Dystrophy Research Subject Registry
Muscular Dystrophy Registry
What is the goal of the study?
This project is to develop a research subject registry for individuals having a muscular dystrophy (MD). The purpose is to allow persons with MD to participate in research projects if they so desire and to provide investigators with research subjects for their scientific projects. The registry will simply be a listing of all persons with MD that have consented to be so listed. The list will include their name, address, phone number, birth date, diagnosis, medical record number, and any results pertaining to a muscle biopsy or genetic testing. The registry will be maintained in a secure computer file in the Neurogenetics clinical office in the CHDD building (Center for Human Development and Disability) adjacent to the University of Washington Medical Center. The only persons having access to this registry will be those investigators whose names appear on the first page of the consent form. (Although Dr. Chamberlain is the principle investigator on the funding proposal, he will not have access to the registry, as he is a research investigator). We also request the ability to review the subject’s medical records in order to verify the diagnosis of MD.
Who can participate in the study?
Please contact the study team listed below to learn more.