What is Myasthenia Gravis
The MG Patient Registry is a project of the Myasthenia Gravis Foundation of America (MGFA). Epidemiological and population-based data is relatively lacking about Myasthenia Gravis (MG). Much of what is known about MG comes from specialty clinics and tertiary referral sources. As treatments for MG have evolved, many patients are treated outside of specialized centers. Other than clinical trials, little is known about the care, alternative treatments and therapies provided, disease progression, or patient-centered information (e.g. quality of life). The MG Patient Registry is a testimony of MGFA’s commitment to driving, guiding, and supporting much needed MG research.
In late Summer 2011, MGFA assessed patient interest to participate in a registry, ie, were patients in favor, would they be willing to participate, would they be willing to use a secure site to submit information, to provide yearly updates, and would they be willing to receive information regarding clinical trials. In August of 2012, MGFA established a MG Patient Registry Committee, comprised of patient stakeholders, neurologists, and others, charged with the task of determining the scope of the registry and setting the objectives and timeline for establishing the registry. In late October 2012, initial discussions with the Data Coordinating Center began on survey and system development. By February 2013 the enrollment survey was finalized, and Data Entry System, Administrative System, and Website development and testing began. At the May 2013 annual MGFA conference in Miami, Florida, the MG Patient Registry was previewed by attendees, and on Friday, July 12, 2013 the Registry was published and open enrollment began.
MGFA partners with patients, professionals and organizations with shared interest in fighting MG, including Investigators who are interested in evaluating important research questions among participants and those who would like to offer research opportunities to individuals with MG. Patient enrollment in the registry is ongoing. Every six months survey updates are published and made available to individuals who are fully enrolled in the registry, i.e., those who have fully completed and submitted the enrollment survey.