Registry for people living with Myasthenia Gravis
Myasthenia Gravis Foundation of America Global MG Patient Registry
Myasthenia Gravis Foundation of America · NCT06617741
This study is collecting information from people with Myasthenia Gravis to understand their experiences, symptoms, and treatments over time.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 3800 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Myasthenia Gravis Foundation of America (other) |
| Locations | 1 site (Westborough, Massachusetts) |
| Trial ID | NCT06617741 on ClinicalTrials.gov |
What this trial studies
This observational study aims to gather information about the experiences of individuals diagnosed with Myasthenia Gravis (MG) in the United States. It focuses on understanding the diagnosis timeline, common symptoms, treatment methods, and the overall impact of MG on daily life and healthcare access. Participants will complete an initial survey upon enrollment and will be invited to provide updates through follow-up surveys every six months. The study seeks to create a comprehensive registry that reflects the lived experiences of those affected by MG.
Who should consider this trial
Good fit: Ideal candidates for this study are adults over the age of 18 who have been positively diagnosed with Myasthenia Gravis.
Not a fit: Patients under the age of 18 or those who have been misdiagnosed with Myasthenia Gravis will not benefit from this study.
Why it matters
Potential benefit: If successful, this registry could enhance understanding of Myasthenia Gravis, leading to improved patient care and treatment strategies.
How similar studies have performed: Other observational studies and registries focusing on chronic conditions have shown success in improving patient outcomes and understanding disease impact, indicating that this approach is promising.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * age over 18 * positive MG diagnosis Exclusion Criteria: * age under 18 * misdiagnosed with MG
Where this trial is running
Westborough, Massachusetts
- Myasthenia Gravis Foundation of America — Westborough, Massachusetts, United States (RECRUITING)
Study contacts
- Principal investigator: Patient Registry PI — Yale University
- Study coordinator: National Director, Patient Registry
- Email: gmvalo@myasthenia.org
- Phone: 8005415454
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Myasthaenia Gravis, Myasthenia, Myasthenia Gravis Associated with Thymoma, Myasthenia Gravis Crisis, Myasthenia Gravis Exacerbations, Myasthenia Gravis Generalised, Myasthenia Gravis with Exacerbation, Myasthenia Gravis, Adult Form