Linking cohorts, understanding biology, improving health

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International HundredK+ Cohorts Consortium (IHCC)

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Policy and Bio-Data Sharing

Charge / Overview

Develop a policy agenda to facilitate and optimize the impact of assembling cohorts; address challenges and identify common needs.

Core Initiatives

  1. Understand the spectrum of legal frameworks governing IHCC cohorts
    • Data sharing
    • Consent
    • Approval of new studies
    • If industry collaboration is allowed
  2. Understand and reuse existing principles
    • Global Alliance for Genomics and Health (GA4GH)
    • General Data Protection Regulation (GDPR)
    • Findability, Accessibility, Interoperability, and Reusability (FAIR) principles
    • Other cohorts and consortia
  3. Understand the needs of proposed scientific projects regarding policy or data sharing
    • Identify essential data needs for early goals
    • Identify ideal sharing model for basic needs
  4. Develop governance and policy structure to guide cohort activities
    • Identify core and common principles for value
    • Identify barriers and solutions for how cohorts come together to collaborate
    • Create foundational documents that might be needed to bring consistency or fill gaps for cohorts
    • Identifying best practice on how to share ‘omics data

Team Leads


Arash Etemadi
John Gallacher
Farin Kamangar
Reza Malekzadeh
Usha Menon
Paul Pinsky
Jessica Reusch
Camilla Stoltenberg
Robyn Ward
Walter Willett
Ma’n Zawati

Core COVID-19 Self-Report Downloads​

Coming Soon

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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