Project Summary

The purpose of our project partnership, Developing Comparative Effectiveness Research in Dravet Syndrome, is to further engage community stakeholders in a collaborative partnership to develop patient-centered outcomes research that reflects the care gaps and unique health concerns of patients with Dravet syndrome. Dravet syndrome is more than a severe epilepsy syndrome, affecting many aspects of a patient’s life. It can be difficult to know what to study beyond seizures. Patients face multiple health issues, including difficulty with sleep, gait, digestion, developmental delays, behavioral problems, and risk of sudden death, which together lead to a decreased quality of life.

The focus of our one-year project partnership is to further refine the potential comparative effectiveness research (CER) questions developed in Tier I down to a few that are strong and viable options with relevance to our community. We will accomplish this through additional outreach to caregivers and community stakeholders, including focus sessions and surveys. We will also determine the tools necessary to measure effectiveness in the top candidate categories. In addition, we will develop a communications plan and a stakeholder engagement plan to allow dissemination of the CER progress.

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Project Information

Mary Anne Meskis
Dravet Syndrome Foundation
$25,000

Key Dates

12 months
2017

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The state where the project originates, or where the primary institution or organization is located.

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Last updated: November 23, 2021