Request for Information (RFI): Curing the Epilepsies 2013 - Updating the Epilepsy Research Benchmarks

Notice Number: NOT-NS-13-003

Key Dates
Release Date: November 30, 2012
Responses due by: January 31, 2013

Issued by
National Institute of Neurological Disorders and Stroke (NINDS)

Purpose

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

Background

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: http://www.ninds.nih.gov/research/epilepsyweb/benchmarks_2007-2012progress.pdf.

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.              
The most important advances in basic, translational, or clinical epilepsy research since 2007.
New or ongoing challenges and opportunities for epilepsy research.
What role the Epilepsy Research Benchmarks have played, or could play, in terms of promoting awareness of shared priorities and stimulating progress.

How to Submit a Response

To assure consideration, responses must be received by January 31, 2013, and should be submitted electronically using the web-based form at www.ninds.nih.gov/2013epilepsiesRFI. The web form will provide confirmation of response submission, but respondents will not receive individualized feedback.

Responses to this RFI are voluntary and may be submitted anonymously.  Please do not include any personally identifiable or other information that you do not wish to make public.  Proprietary, classified, confidential, or sensitive information should not be included in your response.  Comments submitted will be compiled for discussion at the upcoming conference, Curing the Epilepsies 2013: Pathways Forward, and may appear in various reports.  Any personal identifiers (personal names, email addresses, etc.) will be removed when responses are compiled. 

This Request for Information (RFI) is for informational and planning purposes only and is not a solicitation for applications or an obligation on the part of the United States (U.S.) Government to provide support for any ideas identified in response to it.  Please note that the U.S. Government will not pay for the preparation of any information submitted, or for its use of that information.

Inquiries

Please direct all inquiries to:

Cara B. A. Long, Ph.D.
Office of Science Policy and Planning
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Phone: 301-496-9172
Email: cara.long@nih.gov


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