The first International Cohorts Summit was held in March 2018 at Duke University in Durham, North Carolina. Leaders of large-scale longitudinal cohorts worldwide shared best practices, discussed data sharing, explored standards, discussed common challenges, and explored potential collaborative sequencing and other ‘omic strategies. Four teams were created to further develop the plans for IHCC 2019 and beyond
Meeting Objectives
- Improve prospects for interoperability and compatibility of instruments, data formats, phenotypic and clinical measures, etc.
- Promote data sharing and open access policies
- Broaden international cooperation through existing tools and resources
- Explore the feasibility of a “digital” platform, or web-based, evolving registry of
large-scale cohorts, in a searchable format - Examine the potential for a collaborative sequencing (and other -omics?) strategy
- Consider strategies for translating findings for health impact
- Advance a collective vision: where do we want to be in ten years?
100 individuals attended, representing:
- 59 cohort studies
- 24 countries
- 25 million participants
- 36 million anticipated participants
Cohorts were selected based on four criteria:
- 100K+ participants
- Disease-agnostic
- Available biospecimens
- Longitudinal follow-up
Other key facts from the cohorts:
- Some have data available from the 1960s
- Half have whole genomic/exome sequencing data
- Most indicated a willingness to share data with appropriate patient consent
