Notice Number: NOT-NS-20-025
Key Dates
Release Date: December 13, 2019
Response Date: February 20, 2020
None
Issued by
National Institute of Neurological Disorders and Stroke (NINDS )
Purpose
The purpose of this Request for Information (RFI) is to seek broad input from scientists, clinicians, patients, families, caregivers, advocates, and the broader epilepsy community on the most important new or ongoing challenges and opportunities for epilepsy research. Input will be considered for updating the 2014 Epilepsy Research Benchmarks and setting Epilepsy Research Priorities at the Curing the Epilepsies 2020 Conference.
Background
Since 2000, NINDS has worked with the epilepsy community to identify priorities for research. In 2000, 2007 and 2013, 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 revisions 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. Since their initial development in 2000, the Benchmarks have brought attention to goals such as preventing epileptogenesis, addressing aspects of epilepsy beyond seizures, and confronting the challenge of 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. The ICARE Epilepsy Research Portfolio tracks research funding towards the benchmarks by the federal and nonprofit members of the Interagency Collaborative to Advance Research in Epilepsy (ICARE).
On April 13-15, 2020, NINDS will sponsor a fourth public conference, "Curing the Epilepsies 2020: Setting Research Priorities" 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. A new goal for the conference will be for each benchmark area to develop several key gap priorities that address research areas needing a substantial and focused effort in order to make significant advances. These gap priorities will focus on areas where there is currently limited research knowledge and/or where collaborative community efforts can make significant scientific progress in the next 5-7 years toward cures for the epilepsies. The information submitted in response to this RFI will be used by the benchmark stewards committee to revise and update the 2014 Epilepsy Research Benchmarks. The draft revisions to the benchmarks and recommended gap priorities will be presented to the public for further input at the Curing the Epilepsies 2020 conference, which will take place on April 13-15, 2020, on the main NIH campus in Bethesda, MD (Register to attend at Curing the Epilepsies 2020. Registration is free and open to the public).
?Information Requested
The NINDS is soliciting input from all interested stakeholders, including researchers, health care providers, individuals with epilepsy, patient advocates and health advocacy organizations, scientific or professional organizations, federal agencies, as well as other interested members of the public. Organizations are strongly encouraged to submit a single response that reflects the views of their organization and membership as a whole.
Please provide perspectives on the following topics:
- Comments and suggestions regarding the current 2014 epilepsy research benchmarks -- examples include comments about benchmarks that could be removed because they have been achieved and/or are no longer priorities, how the current benchmarks could be revised, and any new research questions that should be included, all based on scientific progress made since 2013.
- New or ongoing research priority challenges and opportunities. Identify the most promising areas of research that the community should focus concerted efforts on based on knowledge gaps or research needs, and which could significantly be advanced in the next 5-7 years. These priorities should be areas of epilepsy research that require a concerted and coordinated effort that will transform and significantly advance research in the area.
How to Submit a Response
To assure consideration, responses must be received by February 20, 2020, and should be submitted electronically using the web-based form at https://www.ninds.nih.gov/RFI-NOT-NS-20-025.
Responses are voluntary and may be submitted anonymously. Respondents are advised that the Government is under no obligation to acknowledge receipt of the information received or provide feedback to respondents with respect to any information submitted. Responses may be shared publicly at the Curing the Epilepsies 2020 conference. Please do not include any personally identifiable or other information that you do not wish to make public. No proprietary, classified, confidential, or sensitive information should be included in your response.
This request is for planning purposes only and should not be construed as a solicitation or as an obligation on the part of the United States Government. The NIH will not make any awards based on responses to this RFI or pay for the preparation of any information submitted or for the Government's use of such information.
Inquiries
Please direct all inquiries to:
Miriam Leenders, PhD
National Institute of Neurological Disorders and Stroke (NINDS)
Telephone: 301-496-1917
Email: miriam.leenders@nih.gov
and Human Services (HHS)
