The Mysathenia Gravis Patient Registry facilitates MG research by offering the registry as a resource for collaborators and by conducting and publishing research based on registry data. The MG Patient Registry provides support for researchers wanting to:

  • recruit patients with MG for research studies
  • collect data not previously captured in the registry
  • access de-identified MG Patient Registry data

Through initial enrollment surveys and bi-annual updates, demographics, medical history, functionality, co-morbidities, providers, therapies, symptom progression and areas of MG research interest are collected.

Enrollment:

  • Demographics (race, education, age, etc.)
  • MG Medical History (diagnosis, initial symptoms)
  • Other Health Conditions
  • Immunotherapies and medications (past and current)
  • Exacerbations
  • Providers
  • Family history
  • Functionality
  • Lifestyle and Quality of Life

Bi-annual Updates:

  • Demographics (insurance, employment, disability, etc.)
  • Other conditions (current)
  • Immunotherapies and medications (current)
  • Exacerbations (recent)
  • Providers (update)
  • Family history (update)
  • Functionality (current)
  • Lifestyle and Quality of Life
  • Others, such as effects of chronic conditions on MG, smooth muscle symptoms, cognition, and restless leg syndrome

To learn more about how you can collaborate with the MG Patient Registry, please contact the team (see the “Contact Us” page for details).

Publications:

Gender and quality of life in myasthenia gravis patients from the myasthenia gravis foundation of America registry. Lee I, Kaminski HJ, Xin H, Cutter G. Muscle Nerve. 2018 Feb 21. [Epub ahead of print] PMID: 29466829

Impact of Refractory Myasthenia Gravis on Health-Related Quality of Life.
Boscoe AN, Xin H, L’Italien GJ, Harris LA, Cutter GR.
J Clin Neuromuscul Dis. 2019 Jun;20(4):173-181. PMID: 31135620

Employment in Refractory Myasthenia Gravis: An MGFA Registry Analysis.
Harris L, Aban IB, Xin H, Cutter G. Muscle Nerve. 2019 Sep 3. [Epub ahead of print] PMID: 31478207

Examining the Impact of Refractory Myasthenia Gravis on Healthcare Resource Utilization in the United States: Analysis of a Myasthenia Gravis Foundation of America Patient Registry Sample. Xin H, Harris LA, Aban IB, Cutter G. J Clin Neurol. 2019 Jul;15(3):376-385. PMID: 31286711

Cross-sectional analysis of the Myasthenia Gravis Patient Registry: Disability and treatment. Cutter G, Xin H, Aban I, Burns TM, Allman PH, Farzaneh-Far R, Duda PW, Kaminski HJ. Muscle Nerve. 2019 Sep 5. [Epub ahead of print] PMID: 31487038

Gender differences in prednisone adverse effects: Survey result from the MG registry. Lee I, Kaminski HJ, McPherson T, Feese M, Cutter G. Neurol Neuroimmunol Neuroinflamm. 2018 Oct 15;5(6):e507. doi:10.1212/NXI.0000000000000507.