Request Information: Scientific Collaborative Considerations Associated the NINDS Epilepsy Centers without Walls Program Notice Number: NOT-NS-10-020 Key Dates Release Date: June 25, 2010 Response Due By: August 6, 2010 Issued National Institute Neurological Disorders Stroke NINDS)
http://www.ninds.nih.gov) Purpose National Institute Neurological Disorders amp; Stroke NINDS) considering issuing series Funding Opportunity Announcements FOAs) the NINDS Epilepsy Centers without Walls Program Promote Collaborative Research the Epilepsies, newly envisioned cooperative agreement program will engage epilepsy research community collaborations solve challenges related the Epilepsy Research Benchmarks
http://www.ninds.nih.gov/research/epilepsyweb/2007_benchmarks.htm). purpose this Request Information RFI) to solicit input will help guide development this new program. Background epilepsies a diverse group chronic neurological disorders characterized spontaneous, recurring seizures. Collectively, disorders estimated affect approximately 3 million Americans all ages ethnic groups, a lifetime risk age 80 3%. highest incidence epilepsy in early childhood, the population the fastest growing incidence the elderly. a majority people epilepsy, medicines and/or surgical interventions control seizures, yet seizures continue about one-third cases even the best available treatment, sometimes leading devastating consequences. Moreover, anti-epileptic treatments adverse side effects, no effective interventions exist prevent development epilepsy those risk. Beyond seizures, sudden unexplained death epilepsy SUDEP) comorbid conditions, such depression cognitive behavioral impairments, increasingly recognized part a broader spectrum problems associated epilepsy. NINDS the lead NIH Institute research the epilepsies has supported important contributions past recent advances. However, challenges remain epilepsy research. further accelerate progress toward goals no seizures, side effects, the prevention epilepsy those risk, NINDS implementing new initiatives epilepsy research, including NINDS Epilepsy Centers without Walls Program Promote Collaborative Research the Epilepsies. program support multicenter, multidisciplinary consortia solve specific research challenges will lead advances prevention, diagnosis, treatment the epilepsies related comorbidities. program bring together best investigators, regardless geographic location, is novel innovative approach harnessing best research address difficult needs a particular field. NINDS expects issue first a series Request Applications RFA) this program fall 2010. first RFAs likely focus human epilepsy genetics animal models epileptogenesis pharmacoresistance translational drug development. RFA soliciting planning grant applications a Center without Walls Sudden Unexpected Death Epilepsy SUDEP) also anticipated fall 2010. Recent planned NINDS workshops these topics be source input the key challenges Centers without Walls program should address. NINDS hold workshops the areas human epilepsy genetics animal models epileptogenesis pharmacoresistance late summer, 2010. NINDS previously held workshop SUDEP November 2008. summary the meeting, includes research priorities identified during proceedings, in preparation. first workshop focus the state the science current large scale epilepsy genetic efforts. workshop assess readiness broad collaboration a US-based consortium how remove barriers collaboration this area. is hoped consensus begin be reached topics such as: priorities, phenotyping standards, retroactive of samples data, informatics data systems issues, informed consent future studies, functional validation studies, data sharing publication policies. second workshop expected focus animal models epileptogenesis pharmacoresistance suitable translational research studies. purpose this workshop to assess utility available models developing testing new therapies prevent epileptogenesis, modify course epilepsy, to control seizures conditions remain resistant currently available treatment options. workshop explore relevance these models specific clinical populations i.e., people develop epilepsy after traumatic brain injury, stroke, prolonged status epilepticus, etc.), regulatory barriers trial design, validation requirements candidate criteria preclinical intervention studies. Information Requested NINDS seeking information will useful developing upcoming workshops the Epilepsy Center without Walls solicitations. Specifically, NINDS requests input the following areas please note it not required address areas order respond; feel free focus those items which are most interested addressing): Challenges exist investigators institutions establishing effective, large-scale, geographically dispersed collaborations. Unique challenges collaboration the areas human genetics, animal models epileptogenesis pharmacoresistance, and/or Sudden Unexpected Death Epilepsy SUDEP). Lessons learned collaborative experiences other disorders are applicable the epilepsies. your experience, approaches models fostering collaborative research find be most effective, why. Approaches models have worked well. Key questions are currently obstacles further progress human genetics, translation therapies epileptogenesis pharmacoresistant epilepsy, and/or SUDEP. questions that should asked the upcoming workshops human epilepsy genetics animal models epileptogenesis pharmacoresistance. Recent advances emerging research should included. topic areas should considered an Epilepsy Center without Walls solicitation future years. Responses Responses should submitted electronically via web-based form available
http://www.ninds.nih.gov/research/epilepsyweb/feedback.htm. Replies individual questions optional, the site permit anonymous responses. Responses be accepted through August 6, 2010. Confidentiality Responses this RFI voluntary may anonymous. Any identifiers e.g., names, institutions, e-mail addresses, etc) be removed responses compiled. Only processed, anonymized results be shared internally scientific working groups convened the NIH, appropriate. Proprietary, classified, confidential, sensitive information should be included your response. Government reserves right use any non-proprietary technical information any resultant solicitation(s). RFI for information planning purposes only should be construed a solicitation as obligation the part the Federal Government, National Institutes Health NIH), and/or National Institute Neurological Disorders Stroke NINDS). NIH does intend award grant contract pay the preparation any information submitted for NIH’s of such information. Respondents be notified the NIH evaluation the information received. basis claims against NIH shall arise a result a response this request information the NIH’s of such information either part our evaluation process in developing specifications any subsequent announcement. Responses be held confidential. Proprietary information should be sent. Inquiries Specific questions this RFI should directed the contact listed below: Brandy Fureman, PhD Program Director, Epilepsies National Institute Neurological Disorders Stroke National Institutes Health
furemanb@ninds.nih.gov Phone: 301-496-1917