#AGBTPH – Teri Manolio, NHGRI – Genomics and the Precision Medicine Initiative

Substitute speaker for Eric Green, who could not attend. “Sends his regrets… and me.”

Precision medicine initiative, announced by president in Jan 2015.  Foundation for something that will change the way we practice medicine.

  • Genomics: Clingen is one resource that will be huge help.
  • EHR have changed a lot in the last 12 years. (Paper replaced by banks of computers.)
  • Technologies, such as wearable devices. Sensors, for instance
  • Data science/Big Data is also transformative.
  • Participant Partnerships, patients become partners, not subjects.

PMI Cohort: One million volunteers, reflecting the make up of the U.S, focus on underrepresented groups.  Longitudinal cohort. (Anyone can volunteer, or, via selection processes.)

Reflect: People, health status, geography, data types.

Benefits:

  • Large and diverse,
  • support focus on underserved,
  • complimenting existing cohorts, not duplicating.

Possible issue: Biasing towards Geeky people. [nice!]

Initial aware were made for pilot studies.  Developing brand, etc.

In July, $55M for Cohort Program Components.

Collaborate with Million Veteran program.

Start with the basic usual information, but will expand as the project grows.

Transformational approach to data access – data sharing with researchers and participants. Colleges, high school etc.  Industry, citizen science.

Will launch when ready and right – want to launch before current administration leaves office, but will happen “when it’s ready”.  Anticipate 3-4 years to reach one million participants.

Funnel of innovation being used: Exploration R&D -> Platform definition -> Advance definition -> Production -> Launch.  Also, Landing Zones: MVP, Goals and Stretch Goals.  Divided into areas that must be done.  [Basically, using industry practices for R&D on academic research?]

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