Linking cohorts, understanding biology, improving health

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International HundredK+ Cohorts Consortium (IHCC)

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Data Standards and Infrastructure

Charge / Overview

Deliver IT standards and infrastructure for IHCC to enable population-scale genomic and biomolecular data accessible across international borders.

Core Initiatives

  1. Create a federated solution with one or two central hubs for discovery across the IHCC network.
    The solution would contain:
    • Federated data discovery/authentication alignment
    • Interoperability / harmonization of data
    • Cohort level metadata representation
    • Federated research analyses
    • Clinical applications
    • Findable, Accessible, Interoperable, Reusable (FAIR) data analyses
    • Ethical, Legal and Social Implications (ELSI) of data sharing
  2. Create an Atlas.
    A barrier to enhanced reuse is finding the data from the queries of users (researchers, clinicians). An Atlas is a short-term solution in which high-level metadata queries can be conducted with an interactive, searchable database that is updated from cohorts regularly.
  3. Create a harmonized cohort metadata by first understanding the complexity of metadata in IHCC, and next creating semantic harmonization using established semantic mapping techniques, e.g.:
    • International Statistical Classification of Diseases and Related Problems (ICD10)
    • SNOMED
    • BiobankConnect

Team Leads


Dan Brake
Marcel Goldberg
Rachel Liao
Daniel MacArthur
Nicky Mulder
Thea Norman
Nancy Pedersen
Hossein Poustchi
Norie Sawada
Joyce Tung
Marie Zins

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