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The field of epilepsy research has undergone a dramatic transformation in the past decade. However, substantial gaps exist in our understanding of epilepsy, from its causes and prevention to its clinical impact and treatment. In March 2000, prominent epilepsy research scientists, health care providers, and leaders of epilepsy organizations came together for a seminal conference to discuss what it would take to reach a cure for epilepsy, defined as the prevention of epilepsy in people at risk, and by effective and safe therapy (“no seizures, no side effects”) for those with the disorder. Cosponsored by the National Institute of Neurological Disorders and Stroke (NINDS), the American Epilepsy Society, Citizens United for Research in Epilepsy, the Epilepsy Foundation, and the National Association of Epilepsy Centers, this White House–initiated conference highlighted advances in neuroscience, imaging, genetics, and clinical research related to mechanisms of epileptogenesis, and emphasized the vital need for further research that would lead to new treatments and cures.
Participants were eager to identify a way to evaluate progress resulting from this historic event, and a session was added to the conference to “benchmark” the outcomes. The NINDS subsequently worked with more than a dozen Epilepsy Research Stewards—established leaders in the field of epilepsy research—to define a series of goals for the field that could serve as a research agenda. The NINDS and the Stewards developed a series of Epilepsy Research Benchmarks based on the three major topic areas of the 2000 Conference: (1) interrupting and monitoring epileptogenesis; (2) genetic strategies; and (3) developing new therapies. The first of these Benchmarks entailed goals that would hasten progress toward understanding the fundamental causes of epilepsy at the anatomic, physiologic, and genetic/molecular levels; and defining markers of epileptogenicity. This Benchmark also encouraged the validation and use of improved animal models for therapeutics testing. The second Benchmark focused on prevention through the use of epileptogenicity markers to identify tissue targets for preventive therapies, and the completion of large clinical trials of neuroprotective or antiepileptogenic compounds in high-risk individuals. The third Benchmark highlighted the development of improved therapies. Markers of epileptogenicity were again emphasized, in this case for the efficacy testing of therapeutics. Other factors were recognized as important for improved personalization of therapies, including an individual’s developmental stage, hormonal status, and genetic profile. Multiple treatment strategies were encouraged, including the continued refinement of bio-sensors and seizure suppression systems, new approaches for epilepsy surgery, and novel therapies such as cell transplants or vaccines. This Benchmark also called for the achievement of a complete cure for a form of genetic epilepsy through appropriate translation through preclinical research studies. A complete list of the original Epilepsy Research Benchmarks is available at: http://www.ninds.nih.gov/funding/research/epilepsy-web/epilepsybenchmarks.htm. Over the subsequent 5 years, the research community made substantial progress on these Benchmarks, including but not limited to advances such as:
These and other advances associated with the original Benchmarks—as well as roadblocks to progress in some Benchmark areas—are detailed in a series of reports available at: http://www.ninds.nih.gov/funding/research/epilepsyweb/epilepsybenchmarks.htm.
As these reports illustrate, research goals are never static, and the evolving needs of the research community, along with the increasing recognition that the comorbidities of epilepsy present a significant challenge to the goal of “no seizures, no side effects,” strongly indicated that a reassessment of the Benchmarks was warranted.
In March 2007, this reassessment took place, with more than 400 researchers, physicians, patients, family members, and epilepsy organization leaders convening on the National Institutes of Health campus to participate in the “Curing Epilepsy 2007: Translating Discoveries into Therapies” Conference. Organized by the NINDS in collaboration with epilepsy research and voluntary organizations, the meeting was a follow-up to the successful conference in 2000. Participants reviewed the original Epilepsy Research Benchmarks and prioritized topic areas felt to be most promising, as well as those in need of attention. The NINDS solicited public input on these changes to the Benchmarks, and the Epilepsy Benchmark Stewards gathered in October 2007 to discuss the input received and to finalize the new set of goals, outlined below and available (along with the specific Stewards who contributed to each of these goals) at: http://www.ninds.nih.gov/funding/research/epilepsyweb/2007_benchmarks.htm.
(For this Benchmarks Area, the Stewards indicated that all goals should be considered as “Short-term.”)
(For this Benchmarks Area, the Stewards indicated that the goals highlighted in bold are priorities of the group.)
These Epilepsy Research Benchmarks are designed to be a collaborative tool that assists researchers in identifying prominent gaps in the field, new areas to explore, and consensus priorities. They are practical goals for researchers to work toward, and are meant to be achievable within the time frames indicated and to offer an opportunity to measure the successes in the field. An important feature of their development was the involvement of a number of junior investigators in the most recent group of Benchmark Stewards. This resulted in an integration of new ideas with the experience of the returning Stewards that will ensure a continuity of leadership in monitoring and updating the Benchmarks in the coming years. Another important feature of the 2007 Benchmarks is the addition of a new Benchmark area focused on the comorbidities of epilepsy—those associated with epilepsy itself as well as those resulting from treatment—which present a significant challenge for both individuals with epilepsy and the medical community. The NINDS looks forward to working with the epilepsy research community to facilitate the implementation of all of the research goals outlined in the Benchmarks, through investigator-initiated proposals as well as workshops and solicitations, as appropriate.
The Innsbruck Colloquium on Status Epilepticus will take place April 2–4, 2009. The conference (chaired by S. Shorvon and E. Trinka) will focus on the following topics: bridging the gap from experimental models to clinical practice; infectious causes and inflammatory mechanisms in status epilepticus (SE); SE in the developing brain; and new treatment options. Registration opens September 1, 2008. For further information, contact the conference secretariat: PCO Tyrol Congress, Rennweg 3, A-6020 Innsbruck, Austria, e-mail: se2009/at/comeinnsbruck.at or visit the conference website: http://www.innsbruck-se2009.eu
This international conference on Epilepsy and Stigma in Africal will take place in Lusaka, Zambia on April 13–17, 2009. The conference is sponsored by the Epilepsy Association of Zambia working in conjunction with the Ministry of Health, the University of Zambia School of Medicine, the Middle Tennessee Chapter of the Society for Neuroscience (USA) and other co-operating partners. It will offer participants the opportunity to explore the neurological and psychosocial impact of epilepsy over the course of a lifetime, and will give individuals from many walks of life and opportunity to learn about the latest in epilepsy research and treatment. For details, please visit the website at http://www.epillepsyzambia2009.org or e-mail info/at/epilepsyzambia2009.org
April 15–19, 2009 in Coral Gables, FL, USA. http://www.aedtrials.com
*Short-term goals are expected to be achievable in less than 5 years.
**Longer-term goals are expected to be achievable in approximately 5–10 years.
We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
Disclosure of conflicts of interest: None of the authors has any conflict of interest to disclose.
NINDS 2007 Epilepsy Benchmark Stewards: Matthew Anderson, M.D., Ph.D., John J. Barry, M.D., Jocelyn F. Bautista, M.D., Anne Berg, Ph.D. (cochair, Area III), Edward Bertram, M.D., Ph.D., Amy Brooks-Kayal, M.D. (cochair, Area III), Ray Dingledine, Ph.D. (cochair, Area I), Jerome Engel, Jr., M.D., Ph.D. (cochair, Area I), Tracy A. Glauser, M.D., Bruce P. Hermann, Ph.D., Ruben Kuzniecky, M.D.,W. Curt LaFrance, Jr., M.D., Brian Litt, M.D., Solomon Moshé, M.D., Susan Spencer, M.D. (cochair, Area II), Carl Stafstrom, M.D., Ph.D., John W. Swann, Ph.D., William Theodore, M.D., H. Steve White, Ph.D., and Karen Wilcox, Ph.D.