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NIH ACD Working Group Releases Report on Design for PMI Cohort

September 18, 2015The National Institutes of Health (NIH) Advisory Committee to the Director (ACD) Working Group on the Precision Medicine Initiative (PMI) Sept.17 presented a report to NIH Director Francis Collins, M.D., Ph.D., on a detailed design framework for building a national research cohort of one million Americans for the PMI.

The report, makes recommendations on cohort assembly, participant engagement, data, biological specimens, and policy and governance. The strategies outlined are based on scientific opportunities identified after several months of stakeholder engagement, including public workshops, and requests for information on privacy and trust principles,  as well as community engagement, both of which the AAMC responded to[see Washington Highlights, June 26].

The report also recommends the appointment of a director of the PMI Cohort Program (PMI-CP). Josephine P. Briggs, M.D., currently Director of the National Center for Complementary and Integrative Health, will serve as the interim director while NIH conducts a national search for a permanent position.

The ACD endorsed the report, which was then accepted by Dr. Collins, moving the plan for the cohort into the implementation stage. NIH hopes to build the infrastructure in time for participants to begin enrolling in 2016.

Dr. Collins noted that “the Precision Medicine Initiative Cohort Program will change the way we do research. Participants will be partners in research, not subjects, and will have access to a wide range of study results. What we’re doing with the Precision Medicine Initiative cohort is intersecting in a synergistic way with other fundamental changes in medicine and research to empower Americans to live healthier lives.”


Anurupa Dev, Ph.D.
Lead Specialist, Science Policy
Telephone: 202-862-6048

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