NINDS RFI - Curing the Epilepsies 2013: Updating the Epilepsy Research Benchmarks


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On the heels of the EFA's call for PCORI reviewers, NINDS is now soliciting the patient community for feedback:

The purpose of this Request for Information is to seek broad input on the most important new or ongoing challenges and opportunities for epilepsy research.


Since 2000, NINDS has worked with the epilepsy community to identify priorities for research. In 2000 and 2007, NINDS sponsored Curing Epilepsy conferences in partnership with nongovernmental organizations and other Federal agencies to assess the state of epilepsy research and identify needs and new directions. These conferences led to the development and subsequent revision of the Epilepsy Research Benchmarks, a series of goals for research toward cures for the epilepsies, defined as no seizures, no side effects, and the prevention of epilepsy in those at risk. The 2007 Benchmarks encompass a range of basic, translational, and clinical research priorities focused on understanding the causes of epilepsy, identifying strategies for preventing epileptogenesis, developing and improving epilepsy treatments, understanding and treating comorbid conditions affecting people with epilepsy, and understanding and ultimately preventing sudden unexpected death in epilepsy (SUDEP).

The Benchmarks are meant to engage the entire epilepsy community in advancing research, including the NIH, NIH grantees and other researchers, epilepsy professional organizations, and the epilepsy patient community. NINDS in particular considers the Benchmarks when planning new investments in epilepsy research and has also worked with epilepsy researchers who serve as Benchmarks Stewards to track and promote progress.

On April 17-19, 2013, NINDS will sponsor a third public conference, "Curing the Epilepsies 2013: Pathways Forward," to reassess the state of epilepsy research. The conference will include scientific sessions on major topics in the field and will culminate in a discussion of possible updates to the Epilepsy Research Benchmarks. To help inform these discussions, the Epilepsy Benchmarks Stewards have prepared a progress report summarizing research advances since 2007, as well as their views on opportunities and challenges for future research. The progress report is available on the NINDS website at:

Information Requested

This request for information is intended to provide a broader perspective on progress made in epilepsy research and on scientific opportunities for the years to come. NINDS invites input from epilepsy researchers in academia or industry, healthcare professionals, patient advocates and advocacy organizations, scientific or professional organizations, Federal agencies, and other interested members of the public. Organizations are strongly encouraged to submit a single response that reflects the views of the organization as a whole. Please provide perspectives on the following topics.

As mentioned with respect to the EFA initiative, this is perhaps an opportunity to get some patient input on the need for more studies on diets, CBT, neurofeedback, etc.