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 Phone Survey Downloads​

The three documents below are the  phone survey scripts. They are comprised of a PDF, a Rich Text Document (Word doc compatible) and a redcap template CSV file.

Each file can stand on its on so please feel free to download any that are needed.

  • Core Covid-19 Phone Survey (PDF)
  • Core Covid-19 Phone Survey (DOC)
  • Core Covid-19 Phone Survey (REDCap template)