Linking cohorts, understanding biology, improving health

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International HundredK+ Cohorts Consortium (IHCC)

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2018 International Cohorts Summit, Durham NC, USA

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

Available Resouces

Core COVID-19 Self-Report Downloads​

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Core COVID-19 Phone Survey Downloads​​

The PDF and Rich Text (Word doc compatible) documents, include the core survey questions, which should be customized for local administration.

The CSV file contains the REDCap data dictionary, containing all core questions and skip logic. It should also be customized for local administration.

Ancillary questions are not part of the core questionnaire, but can be used for additional data capture.

If using the questionnaire, please include the citation on the previous page. If you have any questions about the survey, please contact John Connolly.

Phone Core Survey
Phone Ancillary Survey