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Request Information: Curing Epilepsies 2020: Setting Research Priorities Notice Number: NOT-NS-20-025 Key Dates Release Date: December 13, 2019 Response Date: February 20, 2020 Related Announcements None Issued National Institute Neurological Disorders Stroke NINDS ) Purpose purpose this Request Information RFI) to seek broad input scientists, clinicians, patients, families, caregivers, advocates, the broader epilepsy community the most important new ongoing challenges opportunities epilepsy research. Input be considered updating 2014 Epilepsy Research Benchmarks setting Epilepsy Research Priorities the Curing Epilepsies 2020 Conference. Background Since 2000, NINDS worked the epilepsy community identify priorities research. 2000, 2007 2013, NINDS sponsored Curing Epilepsy conferences partnership nongovernmental organizations other Federal agencies assess state epilepsy research identify needs new directions. conferences led the development subsequent revisions the Epilepsy Research Benchmarks, series goals research toward cures the epilepsies, defined no seizures, side effects, the prevention epilepsy those risk. Since initial development 2000, Benchmarks brought attention goals such preventing epileptogenesis, addressing aspects epilepsy beyond seizures, confronting challenge sudden unexpected death epilepsy SUDEP). Benchmarks meant engage entire epilepsy community advancing research, including NIH, NIH grantees other researchers, epilepsy professional organizations, the epilepsy patient community. NINDS particular considers Benchmarks planning new investments epilepsy research has also worked epilepsy researchers serve Benchmarks Stewards track promote progress. The ICARE Epilepsy Research Portfolio tracks research funding towards benchmarks the federal nonprofit members the Interagency Collaborative Advance Research Epilepsy ICARE). April 13-15, 2020, NINDS sponsor fourth public conference, Curing Epilepsies 2020: Setting Research Priorities" reassess state epilepsy research. conference include scientific sessions major topics the field will culminate a discussion possible updates the Epilepsy Research Benchmarks. new goal the conference be each benchmark area develop several key gap priorities address research areas needing substantial focused effort order make significant advances. gap priorities focus areas where is currently limited research knowledge and/or where collaborative community efforts make significant scientific progress the next 5-7 years toward cures the epilepsies. information submitted response this RFI be used the benchmark stewards committee revise update the 2014 Epilepsy Research Benchmarks. draft revisions the benchmarks recommended gap priorities be presented the public further input the Curing Epilepsies 2020 conference, will take place April 13-15, 2020, the main NIH campus Bethesda, MD Register attend at Curing Epilepsies 2020. Registration free open the public). Information Requested NINDS soliciting input all interested stakeholders, including researchers, health care providers, individuals epilepsy, patient advocates health advocacy organizations, scientific professional organizations, federal agencies, well other interested members the public. Organizations strongly encouraged submit single response reflects views their organization membership a whole. Please provide perspectives the following topics: Comments suggestions regarding current 2014 epilepsy research benchmarks -- examples include comments benchmarks could removed because have achieved and/or no longer priorities, the current benchmarks be revised, any new research questions should included, based scientific progress since 2013. New ongoing research priority challenges opportunities. Identify most promising areas research the community should focus concerted efforts based knowledge gaps research needs, which significantly advanced the next 5-7 years. priorities should areas epilepsy research require concerted coordinated effort will transform significantly advance research the area. to Submit Response assure consideration, responses must received February 20, 2020, should submitted electronically. Responses voluntary may submitted anonymously. Respondents advised the Government under obligation acknowledge receipt the information received provide feedback respondents respect any information submitted. Responses be shared publicly the Curing Epilepsies 2020 conference. Please not include any personally identifiable other information you not wish make public. proprietary, classified, confidential, sensitive information should included your response. request for planning purposes only should be construed a solicitation as obligation the part the United States Government. NIH not any awards based responses this RFI pay the preparation any information submitted for Government's of such information. Inquiries Please direct inquiries to: Miriam Leenders, PhDNational Institute Neurological Disorders Stroke NINDS) Telephone: 301-496-1917 Email: miriam.leenders@nih.gov