Resources for Researchers and Clinicians h1 >
International Consensus Guidance for Management of Myasthenia Gravis
In October 2013, the Myasthenia Gravis Foundation of America appointed a Task Force to develop treatment guidance for MG, and a panel of 15 international experts was convened. Guidance statements were developed for symptomatic and immunosuppressive treatments, IV immunoglobulin and plasma exchange, management of impending and manifest myasthenic crisis, thymectomy, juvenile MG, MG associated with antibodies to muscle-specific tyrosine kinase, and MG in pregnancy.
Biologic Therapies in Myasthenia Gravis
In this video interview for Medscape’s ReCAP series, Henry Kaminski, MD, discusses how the management of generalized myasthenia gravis has evolved, leading to the introduction of biologic therapies.Watch the Video
Dr. Henry Kaminski on the Difficulties of Treating Myasthenia Gravis
In this Rare Care podcast episode from Rare Disease Advisor, Henry Kaminski, MD, discusses the difficulties of treating myasthenia gravis.Listen to the Podcast
MGNet Seeks Public Comments on Proposed Outcome Measures h2 >
The NIH-supported Rare Disease Clinical Research Consortium (RDCRC) for myasthenia gravis (MGNet), which is part of the Rare Diseases Clinical Research Network (RDCRN), views standardization of myasthenia gravis (MG) outcome measures as a critical need for clinical trials. To address this issue, MGNet convened an outcome measure symposium and a working group charged with refining specific MG outcome measures and their instructions for administration, based on consensus opinion. The goal was to improve the clarity of instructions and scoring and reduce outcome measure variability.
Six outcome measures were included in this effort. Please view the draft measures at the following links:
- Draft Quantitative Myasthenia Gravis Score (QMG) and Quantitative Myasthenia Gravis-Revised Score Instructions
- Draft MG Activity of Daily Living Scale (MG-ADL)
- Draft MG Quality of Life-15 (MG-QOL15 and MGQOL15 revised)
- Draft MG Composite
- Draft MG Impairment Index (MGII) and MG Impairment Index (MGII) Patient Questionnaire
Ultimately, implementing these recommendations is expected to lead to less data variability, greater efficiency, and fewer errors at clinical sites.
As the next step in the process, MGNet sought public comments to help ensure that the views of all stakeholders are heard. We would valued the input and comments on the proposed revisions.
The public commentary period has closed. Comments were accepted between May 9th, 2022 and Jun 24, 2022.
Following the public commentary period and final revisions, MGNet intends to develop a comprehensive set of training materials and case report forms for each outcome measure that reflect the recommended changes. MGNet anticipates holding training sessions for study teams at future meetings and offering initial and renewal certification processes for clinical trial raters.
Thank you for your input on this important effort to improve clinical trial conduct in MG.
Jeffrey Guptill, MD
Michael Benatar, MD, PhD
On behalf of the MGNet Clinical Trial Outcome Measure Working Group