2020 Epilepsy Research Benchmarks

A cure is important but so is the person

Area IV:A In this section, there is no mention of treatment for mental health disorders. The language does indicate "understand and limit the impact of epilepsy" on mental health outcomes and then in D "identify causes and risks for epilepsy related mortality" due to mental health conditions. But, this does not appear to account for non-pharmacological interventions in the treatment of mental health disorders. There is a growing body of research demonstrating support for these interventions, and, to date, NINDS has taken a very "basic science" approach to epilepsy. To ignore this body of research as a relevant and evidence-based option for treatment of mental health disorders in persons with epilepsy is problematic. Similarly, there is no mention of self-management anywhere in these research objectives. If we are truly, as an epilepsy research community, interested in comprehensive care for persons with epilepsy, using the latest and most innovative methods to treat persons with epilepsy, should we not be considering the totality of epilepsy? Until we have a cure for epilepsy, are we not aiming to help people with epilepsy live with optimal quality of life? If so, then we must consider self-management, treatment of comorbidities, including non-pharmacological interventions, and other aspects (e.g., adherence, quality of life) as important as seizure control.

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Idea No. 41