The Myasthenia Gravis Patient Registry is an active database of persons with myasthenia gravis (MG), developed for the purposes of research, treatment, and patient information. The Registry is managed by the Coordinating Center of the University of Alabama at Birmingham (UAB) with oversight by the MGFA Patient Registry Committee.
The MG Patient Registry is:
- For myasthenia gravis research
- Participant-driven
- Free to enroll
- Confidential
- Open to Adults 18+ in the U.S.
What types of questions are in the enrollment survey?
- General contact information
- Demographic information, for example, education, employment status, income, insurance
- Year, month, and place of birth of parents and grandparents
- Information on places where you lived when you were under 25 years old
- MG medical history; including tests and diagnoses, treatments, other conditions, family’s MG history
- Information on quality of life and lifestyle
- Future, follow-up surveys will contain a subset of the enrollment questions as well as one new section of questions
- To learn more about the MG Patient Registry, see here.
- To join the MG Patient Registry, see here.