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For Cohort Leaders

How twin, adoption, extended-family, and related genetically informative studies can contribute to a shared scientific resource — and what participation is intended to offer.

Contributing to a Shared Resource

Building a shared family-based research resource

The ETAF Data Commons is seeking to develop a framework that makes it easier for cohorts to contribute to a shared scientific resource while preserving cohort identity, respecting consent constraints, and ensuring appropriate recognition. No cohort agreements have been finalized. We are in early conversations with potential contributing studies.

Anticipated benefits for contributing cohorts

  • Embed cohort data in a larger, persistent family-based genomic resource
  • Increase cohort visibility and scientific use over time
  • Strengthen future funding applications for the cohort and the broader initiative
  • Receive support for phenotype harmonization and metadata documentation
  • Participate in shaping governance, protocols, and future data collection
  • Enable analyses that are not possible in any single cohort
  • Preserve cohort-specific identity, consent constraints, and use restrictions

Current anticipated participation features

Participation criteria and governance procedures are still being developed. The following represents current thinking and is subject to change.

  • Family-based design, broadly defined — including twin, adoption, sibling, extended family, or other designs capturing genetic relatedness
  • Usable phenotypic data on study participants
  • Study-level metadata available for documentation
  • Consent and data-sharing feasibility — ability to share de-identified data under a controlled-access model
  • Genomic data, banked DNA, or a plausible path toward future genomic data where possible (not required for initial participation)
  • Willingness to consider future harmonized phenotypic collection alongside existing instruments

Note: These criteria are indicative and preliminary. Formal participation protocols are under development and will be released in forthcoming governance documentation.

Interested in contributing a cohort?

We welcome early conversations with cohort leaders regardless of formal readiness. Contact us to discuss your study and how it might contribute to the initiative.

Contact the Initiative

or email directly: contact@etafdatacommons.org