Dravet Syndrome Foundation and Children's Hospital Colorado Awarded PCORI Funding to Develop Comparative Effectiveness Research

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The project’s goal is to develop an ongoing collaboration with a greater understanding of the needs of the Dravet syndrome community.

Dravet Syndrome Foundation (DSF) and Children’s Hospital Colorado have been approved for Tier I funding from the Patient‐Centered Outcomes Research Institute (PCORI). The approved project is entitled “Developing Comparative Effectiveness Research in Dravet Syndrome.” The project is part of a portfolio of patient‐centered comparative clinical effectiveness Engagement Awards that addresses PCORI’s National Priorities for Research and Research Agenda. Tier I funding is the initial phase of PCORI’s three-tier Pipeline to Proposal program. Tier I awards of up to $15,000 each fund community-building and engagement projects

Mary Anne Meskis, Executive Director, DSF, and Kelly Knupp, MD, Associate Professor of Pediatrics & Neurology, University of Colorado, pediatric epilepsy specialist at Children’s Hospital Colorado will lead the project. Participants include Anne T. Berg, PhD, Lurie Children’s Hospital, Chicago, IL; Linda C. Laux, MD, Lurie Children’s Hospital, Chicago, IL; Ian O. Miller, MD, Nicklaus Children’s Hospital, Miami, FL; Jack M. Parent, MD, University of Michigan, Ann Arbor, MI; Joseph E. Sullivan, MD, University of California, San Francisco, CA; and Elaine C. Wirrell, MD, Mayo Clinic; Rochester, MN. Additional participants include parents and other key stakeholders in the Dravet syndrome community

The project’s goal is to develop an ongoing collaboration with a greater understanding of the needs of the Dravet syndrome community, as well as a greater understanding of the research project. Creating a shared knowledge base amongst these collaborators will lead to prioritization of research that will most greatly suit the needs of families living with Dravet syndrome, including both long-term and short-term projects. Allowing clinicians and researchers to “walk in the shoes” of those living with Dravet syndrome will lead to improved clarity of the needs of the community and moreover with this broad inclusion of stakeholders, we hope that the most efficient research will be developed.

About Dravet Syndrome Foundation
Dravet Syndrome Foundation is a 501(3)c nonprofit organization based in Connecticut whose mission is to aggressively raise research funds for Dravet syndrome and related intractable childhood epilepsies, while providing support to affected individuals and families. Since its inception in 2009, DSF has awarded over $2.5M in research grant awards and over $110K in patient assistance grants. More information is available at http://www.dravetfoundation.org.

About Children’s Hospital Colorado
Children’s Hospital Colorado (Children’s Colorado) has defined and delivered pediatric health care excellence for more than 100 years. Founded in 1908, Children’s Colorado is a leading pediatric network entirely devoted to the health and well-being of children. Continually acknowledged as one of the nation’s top ten Best Children’s Hospitals by U.S. News & World Report and Parents magazine, Children’s Colorado is known for both its nationally and internationally recognized medical, research, education and advocacy programs, as well as comprehensive everyday care for kids throughout Colorado and surrounding states. Children’s Colorado also is recognized for excellence in nursing from the American Nurses Credentialing Centers and has been designated a Magnet® hospital since 2005. The hospital’s family-centered, collaborative approach combines the nation’s top pediatric doctors, nurses and researchers to pioneer new approaches to pediatric medicine. With urgent, emergency and specialty care locations throughout Metro Denver and Southern Colorado, including its campus on the Anschutz Medical Campus, Children’s Colorado provides a full spectrum of pediatric specialties. For more information, visit http://www.childrenscolorado.org

The Patient‐Centered Outcomes Research Institute (PCORI) is an independent, non‐profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence‐based information needed to make better‐informed health care decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at http://www.pcori.org.

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