Roger Morse and Celia Meyer, two members of the myasthenia gravis (MG) community, tell us about their efforts to encourage other members to join the MG Patient Registry, which was established in 2013 with the help of Gary Cutter, PhD, a biostatistician at the University of Birmingham in Alabama.
Since its inception, the MG Registry has attracted the attention of several pharmaceutical companies that have mined the registry to determine feasibility of potential treatment options and clinical trials, says Nancy Law, CEO of the Myasthenia Gravis Foundation of America (MGFA).
Roger: The MGFA established the registry but it wasn't being used to its capacity. Only about 1,000 people were registered. More than 60,000 people in the United States are estimated to have MG [an autoimmune disease that causes muscle weakness], so that isn't great representation. We decided to try to double that number in a year. Celia saw the value in adding to the registry and jumped on board. Fourteen months later, that number was up to 2,103. Now, we try to increase the number every month.
Celia: When I found out I had MG, it was depressing that there was very little interest in the disease from researchers. I realized that in order to attract the interest of pharmaceutical companies and researchers we'd have to increase the number of participants in the Registry. Roger and I realized that many in our community didn't even know about it.
Roger: We helped the MGFA put together a brochure about the Registry that we can distribute in doctors' offices. But for the most part we use social media.
Celia: We've sent letters and brochures to support group leaders asking them to discuss the importance of the Registry at their meetings. Brochures are also distributed at the MG Walks held throughout the country.
Celia: They can sign up online at mgregistry.org. There is also a link to the MG Registry on the MGFA website.
Roger: It's quite involved. And it can take a while, especially if you aren't computer savvy. It asks about treatments, medication, family history, military service, quality of life, and emotional status. And every six months, there is an updated questionnaire that may focus on a specific topic like prednisone, for example.
Roger: It's a time commitment and they may worry about privacy and security. But the patient data are secured so no one can pull it up or identify its source.
Celia: None of the data that is mined contains personally identifying information, which seems to be one of the biggest concerns. Once we explain that no one will know who the information came from, that usually helps.
Celia: In my opinion, a registry is the best way we have to get pharmaceutical and research companies interested and involved. The more people we have registered, the more we can learn about MG overall. What do we all have in common? What impacts us environmentally? What trends can we find across our community? We won't know until we get our numbers up.
Roger: It's a way for each patient to advocate for him or herself and to make sure research money goes toward the disease. And if there's a clinical trial for whom a person is qualified, the Patient Registry will send an email suggesting he or she might want to look into it.
Celia: The MG Registry was used for a study on the effectiveness of thymectomies for AChR + myasthenics. Alexion, the company that manufactures eculizumab (Soliris), [an immunosuppressive drug awaiting approval for use in treatment-resistant generalized MG] that is currently up for FDA also used the Registry data.
Roger: We create little graphics; some silly, some serious and try to post them in all support groups. . We've had months where we only registered 30; in another month we had 80 people register.
Celia: We always have a person or two who says it's the first time he or she has heard of the MG Registry. We always try to keep the delivery of the message fresh and fun.
Celia: I'm really excited about the possibility of eculizumab getting approved. That's something huge that's in the pipeline. Also, Donald Sanders, MD, FAAN, professor of neurology at Duke University School of Medicine, and Pushpa Narayanaswami, MD, FAAN, associate professor of neurology at Harvard Medical School, will be using the MG Registry to help identify the best treatments for myasthenia gravis.