We would like to welcome MGFA members to a new column that will appear quarterly. Our goal is to highlight some of the latest developments in research related to neuromuscular junction disorders. Every column should include new developments in myasthenia gravis (MG), but we will be covering other disease states as well. For this inaugural column, we will lead with congenital myasthenic syndrome. Read more here.
The Network for Excellence in Neuroscience Clinical Trials (NeuroNEXT) is currently looking for people with myasthenia gravis (MG) to be part of a research study.
Rituximab Study FAQs
Additional Rituximab Study Information
Alexion Pharmaceuticals is conducting a clinical trial to determine if eculizumab is effective for the treatment of patients with refractory generalized Myasthenia Gravis (gMG). This is a global trial, with approximately 100 sites in North and South America, Europe and Asian-Pacific countries are taking part. This study is currently looking for patients with refractory gMG. Read more here.
The International Symposium, held in cooperation with the New York Academy of Sciences every five years, is a larger, international forum focusing on ready-to-publish basic and clinical medical research and helping connect the global myasthenia gravis medical community. The 12th International Symposium was held in New York City in May 21-23, 2012 at the The New York Academy of Sciences in New York. Click here for additional details.
In a recent paper, Jeffrey T. Guptill MD and Donald B. Sanders MD reviewed data on 110 MuSK-MG patients from two clinics, in Italy and the USA, that follow a large number of these patients. Their findings are summarized here.
The mission of ITMIG is to promote the advancement of clinical and basic science pertaining to thymic and other mediastinal malignancies and related conditions. ITMIG is an academic organization that provides structure, organization and scientific rigor to research in these diseases. ITMIG has been embraced by other professional organizations in related fields, including the Myasthenia Gravis Foundation of America. For more information click here.
At present, several drugs and treatments for MG are undergoing Clinical Trials. There is a dedicated website where hospitals, research institutes and pharmaceutical companies are posting their needs for volunteers to participate in such clinical trials. Find Out More.
Drug Warning for Myasthenia Gravis Patients: “Black Box” Warning for generic and brand name Cipro® (ciprofloxacin) and Avelox® (moxifloxacin)
M/SAB Member Awarded Grant To Test Potential MG Treatment
Matthew Meriggioli was awarded a grant from the Muscular Dystrophy Association to test immune-system modulator for myasthenia gravis. Read the complete article here.
M/SAB Contacts Editor of Neurology
In a recent issue of the journal Neurology, the American Academy of Neurology published an evidence-based guideline update, entitled “Evidence-based guideline update: Plasmapheresis in neurologic disorders: Report of the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology.” In that update, the authors stated that there is insufficient evidence to be able judge the efficacy of plasma exchange for myasthenic crisis and for treatment prior to thymectomy.
The MGFA and its Medical/Scientific Advisory Board (M/SAB) became concerned that this update has the possibility of adversely affecting the treatment of MG patients, and particularly the use of plasmapheresis as part of their treatment. Out of that concern, the M/SAB issued a letter to the Editor of Neurology, a copy of which can be read here.
If you are denied coverage of plasmapheresis (plasma exchange) in the treatment of your MG as a result of the Neurology Update, we invite you to contact the MGFA to let us know.
MGTX Clinical Trial
For the last five years investigators from around the world have been conducting the MGTX clinical trial, which attempts to determine whether the combination of prednisone and thymectomy leads to better treatment than prednisone only for patients with MG. The National Institutes of Health has agreed to continue funding to complete the trial. If you are between the ages of 18-65 and within five years of diagnosis, you may be eligible for the study. For additional details and contact information, please visit the MGTX official website here.
National Institutes of Neurological Disorders and Stroke (NINDS) Blue Sky Initiative
Click here to see MGFA's response to questions posed by National Institutes of Neurological Disorders and Stroke (NINDS) as part of its long term strategic planning effort as it relates to myasthenia gravis and disorders of neuromuscular transmission.
Genes Underlying Myasthenia Gravis: GWAS update
There is a great deal of evidence that genetic influences predispose individuals to Myasthenia Gravis (MG), and play important roles in its clinical features. To analyze the genes that are related to MG, a Genome Wide Association Study (GWAS) is being conducted with support from MGFA. The ultimate goal of the study is to understand the genetic factors underlying MG and be able to target the relevant genes to provide new and effective treatments for MG.Read the full story in the Foundation Focus [on page 13] here
Generic Version of CellCept
The FDA has approved the generic version of the Roche drug CellCept. The Medical/Scientific Advisory Board (M/SAB) believes the medication is equivalent to CellCept. However, our MSAB is stating that every patient should contact their neurologist regarding the switch prior to any change. No one should make the switch without a physician consultation.
The MGFA and the MSAB wish to inform MGFA members and others in the MG community that ambenonium chloride (Mytelase) will no longer be produced. This is an older acetylcholinesterase inhibitor and is rarely used in clinical practice. Pyridostigmine (Mestinon) has been the mainstay of anticholinesterase therapy for many years in myasthenia gravis. If you have been taking ambenonium, please contact your treating physician for available alternatives. To read the statement from Sanofi regarding Mytelase click here.