The National Institutes of Health has formed a team of experts to help chart the future course for President Obamas $215 million Precision Medicine Initiative.
The Presidents vision includes a national research cohort of 1 million or more participants who will volunteer to share their biological, environmental, lifestyle and behavioral information, as well as tissue samples with researchers.
Created as a working group of the Advisory Committee to the NIH Director, the team will help define what can be learned from a study of this scale and scope, what issues will need to be addressed and considered as part of the study design, and what success would look like five and 10 years out, states NIHs March 30 announcement.
NIH is taking a lead role in the multi-agency Precision Medicine Initiative which also includes the U.S. Food and Drug Administration and Office of the National Coordinator for Health IT. Of the $215 million requested in the fiscal year 2016 budget for the Precision Medicine Initiative, $130 million is dedicated to beginning the process of building the group of 1 million or more research participants.
Establishing a 1 million person cohort is an audacious endeavor, said NIH Director Francis S. Collins, M.D., in a written statement. But the results from studying such a large group of Americans will build the scientific evidence necessary for moving precision medicine from concept to reality. Im confident that weve pulled together the best of the best in this working group to put us on the right path forward. And we look forward to broad input from a wide cross-section of stakeholders as this process moves forward.
According to NIH, the working group will gather additional input from patient and scientific stakeholder groups through a combination of public workshops on precision medicine topics, including privacy, electronic health records, mobile health technologies, existing research cohorts, participant preferences, and inclusion of minority and underserved populations. The working group will deliver a preliminary report in September 2015 that will inform efforts to accelerate the understanding of individual differences that play a role in health, with the goal of informing better prevention and treatment strategies tailored for each person, states the announcement.
The 16-member working group for building the research cohort has three co-chairs:
*Richard Lifton, M.D., Ph.D.,Chair, Department of Genetics at Yale University School of Medicine, and Executive Director of the Yale Center for Genomic Analysis.
*Bray Patrick-Lake, M.F.S., Director of Stakeholder Engagement, Clinical Trial Transformation Initiative, Duke University.
*Kathy Hudson, Ph.D., Deputy Director of Science, Outreach, and Policy, National Institutes of Health.
The working group will also include ex-officio members from the Department of Defense, Department of Veteran Affairs, FDA, ONC, and the White House Office of Science and Technology Policy.
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