The Myasthenia Gravis Rare Disease Network (MGNet) is a consortium of academic medical centers partnering with the Myasthenia Gravis Foundation of America and Conquer MG as well as collaborators in other research groups and industry. We are working together to enhance therapeutic development for this rare disease.
MGNet is part of the National Institutes of Health’s Rare Diseases Clinical Research Network (RDCRN).
MGNet Seeks Public Comments on Proposed Outcome Measures
MGNet is seeking public comments on proposed outcome measures designed to improve the clarity of instructions and scoring and reduce outcome measure variability. Read more
Myasthenia gravis (MG) is an autoimmune disorder caused by antibodies against proteins at the nerve-muscle communication point. Within that common, well-defined pathology, distinct subtypes of MG exist. The underlying cause and response to treatments likely varies based on patient age (early vs late onset), thymus abnormality (thymoma, thymic hyperplasia or thymic atrophy), and antibody status (acetylcholine receptor antibody, muscle specific kinase antibody, or an absence of detectable antibodies antibodies-seronegative MG). The causes of each sub-type likely differ. Therapies exist, but they have significant side effects and some patients respond poorly. Studies show that even with treatment, some patients have poor quality of life.
The goal of MGNet is to advance therapeutic development. To do so we have four specific aims:
- Improve the tools scientists and doctors have for performing clinical trials through rigorous monitoring of patients over time and evaluate better measures of how patients are doing.
- Identify objective measures (biomarkers) to show how the disease is responding to treatment and better predict treatment response or side effects, to improve design of clinical trials and care of patients in clinical practice.
- Enhance education of young investigators focusing their careers on rare diseases and specifically MG.
- Improve the awareness of scientists, physicians, and the public regarding the unique needs of patients with MG through training of clinician scientists and engagement of the patient and scientific communities in clinical research and therapeutic development.
MGNet is funded by the National Institute of Neurological Disorders and Stroke and the National Center for Advancing Translational Sciences.
Myasthenia Gravis (MG) and its subtypes:
- Early-onset acetylcholine receptor (AChR) antibody (Ab) positive MG, which primarily affects women
- Late-onset AChR Ab positive MG with a disease bias towards men
- Paraneoplastic thymoma-associated MG
- Muscle specific kinase (MuSK) Ab positive
- AChR/MuSK antibody negative MG.