Myasthenia Gravis Foundation of America Global MG Patient Registry
Launched by MYASTHENIA GRAVIS FOUNDATION OF AMERICA · Sep 26, 2024
Trial Information
Current as of July 01, 2025
Recruiting
Keywords
ClinConnect Summary
The Myasthenia Gravis Foundation of America is conducting a study to better understand the experiences of people living with Myasthenia Gravis (MG), a condition that affects muscle strength. This research aims to answer important questions like how and when people are diagnosed with MG, what symptoms they experience, the treatments they use, and how MG impacts their daily lives, jobs, and overall quality of life. Participants in this study will fill out a survey to enroll and will be asked to complete follow-up surveys twice a year to provide updates on their health and experiences.
To be eligible for this study, participants must be over 18 years old and have a confirmed diagnosis of Myasthenia Gravis. Unfortunately, those under 18 or those who have been misdiagnosed with MG cannot participate. This study is currently recruiting participants of all genders, and it offers a chance for individuals to share their experiences, which can help improve understanding and treatment of MG in the future.
Gender
ALL
Eligibility criteria
- Inclusion Criteria:
- • age over 18
- • positive MG diagnosis
- Exclusion Criteria:
- • age under 18
- • misdiagnosed with MG
About Myasthenia Gravis Foundation Of America
The Myasthenia Gravis Foundation of America (MGFA) is a leading nonprofit organization dedicated to improving the quality of life for individuals affected by myasthenia gravis, a chronic autoimmune neuromuscular disorder. Committed to advancing research and clinical trials, MGFA plays a pivotal role in fostering collaboration among researchers, healthcare professionals, and patients to accelerate the development of effective treatments. Through education, advocacy, and support initiatives, the foundation aims to raise awareness, promote innovative research, and enhance patient care, ultimately striving for a future free from the challenges posed by myasthenia gravis.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Westborough, Massachusetts, United States
Patients applied
Trial Officials
Patient Registry PI
Principal Investigator
Yale University
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported