One of the hardest parts of living with a rare disease like myasthenia gravis is just finding someone else who lives with the disease.
MG patients are few and far between—according to the Myasthenia Gravis Foundation of America (MGFA), 20 out of every 100,000 people in the U.S. have MG (though the real number is likely higher).
And that isolation doesn’t just impact patients: Researchers looking to launch new clinical trials or better understand MG also face difficulties when it comes to identifying participants.
The MGFA is aware of that, and have come up with a possible solution: The Myasthenia Gravis Patient Registry. Part of a partnership with the University of Alabama at Birmingham, the Registry is a voluntary database open to anyone with MG over the age of 18.
The goal is to get as many MG patients as possible to join the database, and provide demographic and medical information along with regular health updates.
Researchers will be able to access the database to identify possible candidates for clinical trials. All participants have the option of backing out at any time and are not obligated to participate in trials. Even if they aren’t selected to participate in research, everyone on the Registry will receive an annual MG Registry Newsletter.
The study coordinators promise to protect your confidentiality, and won’t sell your personal information for fundraising or advertising. Of course, there is always some risk associated with sharing personal data.
But if you’re comfortable with that risk and want to help science better understand myasthenia gravis, this is something you can do right now!
