The CURE Foundation has funded a retrospective clinical study of the utility of off-label use of NMDA receptor antagonists, including memantine (Namenda), dextromethorphan, and ketamine (Ketalar) in the treatment of patients with Glutamate Receptor Associated Disorders that likely arises from a de novo GRIN genetic mutation or rare GRIN variants. Patients, with GRIN mutations, regardless of epilepsy or treatment, are also needed and encouraged to participate.
The goals are to begin to understand, 1) the relationship of GRIN mutations to the effectiveness of all therapies, 2) the relationship of GRIN mutations to current and past clinical features (epilepsy, delays, movements, vision, etc). Our long-term goals are to use this data to obtain funding for prospective clinical trials and long-term natural history studies.
The study is being led by neurologists at the University of Colorado (Dr. Tim Benke), Harvard University (Dr. Ann Poduri), University of Pennsylvania (Dr. Eric Marsh), Emory University (Dr. Sooky Koh), and Peking First Hospital (Dr. Yuwu Jiang).
Patients with GRIN mutations are potential candidates for this study, and should contact the study coordinator (Jenifer Sargent) to discuss eligibility and enrollment.
Please note: We cannot provide families treatment advice. At the moment there are no specific therapies for GRIN disorders and this is precisely why we are doing these studies. If your clinicians have questions regarding therapies and treatments, they can contact the clinicians listed above
In most cases, participation can take place under the care of your existing physician, without the need for travel. Visit Clinical Trials for more information.