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.
- Demographics (race, education, age, etc.)
- MG Medical History (diagnosis, initial symptoms)
- Other Health Conditions
- Immunotherapies and medications (past and current)
- Family history
- Lifestyle and Quality of Life
- 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).
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.
Longitudinal Analysis of Disease Burden in Refractory and Nonrefractory Generalized Myasthenia Gravis in the United States. Harris L, Allman PH, Sheffield R, Cutter G. J Clin Neuromuscul Dis. 2020 Sep; 22(1):11-21. doi: 10.1097/CND.0000000000000301.
The Impact of Myasthenia Gravis on Healthcare Resource Utilization: Empirical Evidence from a US Registry Sample. Haichang Xin, Linda Harris, Inmaculada Aban, Gary R. Cutter. Poster presentation: ISPOR Europe 2018, Barcelona, Spain, November 10-14, 2018.
The Impact of Refractory Myasthenia Gravis on Patient Health-Related Quality-of-Life. Audra N. Boscoe, Haichang Xin, Gilbert J. L’Italien, Linda Harris, Gary R. Cutter. Target meeting: Poster presentation: at 15th International Congress on Neuromuscular Diseases, Vienna, Austria, July 6-10, 2018.
Longitudinal analysis of disease burden in refractory and non-refractory myasthenia gravis. Harris, H Xin, PH Allman, R Sheffield, G Cutter. Poster presentation: at 5th Congress of European Academy of Neurology 2019.
Thymectomy Status and Quality of Life in Myasthenia Gravis Patients from the MGFA Registry. Lee I, Kaminski H, Xin H, Cutter G. Poster presentation: 13th International Conference on Myasthenia Gravis and Related Disorders, NY, NY.
Gender and Quality of Life in Myasthenia Gravis Patients from the MGFA Registry. Lee I, Kaminski H, Xin H, Cutter G. Best Abstract Award recipient presentation: Oct/2017 AANEM meeting, Phoenix, AZ.
Prednisone adverse effects are common and associated with unwillingness to accept a dose increase: survey result from MGFA registry. Lee I, Kaminski H, McPherson T, Feese M, Cutter G. Poster presentation: 2018 April AAN meeting, Los Angeles, CA.
Gender difference in prednisone adverse effects: From MGTX database. Lee I, Kaminski H, McPherson T, Kuo H, Cutter G. Poster presentation: 2018, Oct AANEM meeting, Washington DC.
Title: What have we learned from the MG patient registry data? Ikjae Lee MD, Invited presentation at the MGFA National Meeting in Atlanta (2019).
Impact of the COVID-19 pandemic on myasthenia gravis patients: a survey of the MGFA Registry. Andrés De León-Benedetti MD, Inmaculada Aban PhD, Tarrant McPherson MA, Volkan Granit MD MSc, Michael Benatar MD PhD, Gary Cutter PhD, Ikjae Lee MD. Poster to be presented at AAN 2021 conference.
Prevalence and impact of restless legs in patients with myasthenia gravis. Mohannad AlGaeed MD, Tarrant McPherson MA, Ikjae Lee MD, Michelle Feese MPH, Inmaculada Aban PhD, Gary Cutter PhD, Henry J. Kaminski MD1, Elias G. Karroum MD PhD. To be presented at SLEEP 2021 conference.
Title: What have we learned from the MG Patient registry? Ikjae Lee MD, Invited MGFA Webinar series “What’s New in Research” (February 12, 2021).
One year follow-up of disease burden and medication changes in patients with Myasthenia Gravis: from the Myasthenia Gravis patient registry. Ikjae Lee Presentation: AANEM Oct 13-16 2021