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.
We welcome expressions of interest and early conversations, but broader cohort accession is expected only after seed funding is obtained and the seed-phase infrastructure, governance, and harmonization processes have been tested.
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.
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Family-based design, broadly defined — including twin, adoption, sibling, extended family, or other designs capturing genetic relatedness
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Usable phenotypic data on study participants
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Study-level metadata available for documentation
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Consent and data-sharing feasibility — ability to share de-identified data under a controlled-access model
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Genomic data, banked DNA, or a feasible path to future genomic data generation — for broader participation, the initiative expects to prioritize cohorts with existing genomic data, banked DNA, or a plausible path toward future genomic data generation. Exact requirements remain under discussion and will be shaped by consent, governance, funding, and scientific considerations.
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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 Initiativeor email directly: contact@etafdatacommons.org
Proposed cohort accession path
The following outlines how cohorts may join in the future. This path is proposed, not finalized, and the exact process will be refined through governance development, funding, and early cohort feedback.
Expression of interest
Cohort leaders contact the initiative to indicate interest and provide a brief description of the study.
Initial eligibility review
The initiative reviews the cohort's design, size, phenotypic coverage, and genomic data status against participation criteria.
Consent and data-use review
Cohort consent documentation is reviewed to assess feasibility of sharing under a controlled-access model. Applicable use restrictions are documented.
Metadata intake
Study-level metadata are collected and curated: design, sampling frame, family structures, phenotypic domains, follow-up waves, and institutional context.
Phenotype and family-structure review
Phenotypic variables are mapped against harmonization targets. Family-structure data are reviewed for compatibility with pedigree-based analyses.
Genomic data review or future data plan
Existing genotyping arrays, imputation status, and quality-control pipelines are reviewed. For cohorts without current genomic data, a feasible path to future data generation is discussed.
Governance and access approval
A data-use agreement is drafted, reviewed by the relevant institutional parties, and executed. Cohort-specific access restrictions are encoded.
Cloud onboarding and data transfer
Data are transferred to the secure cloud environment following agreed-upon transfer protocols. QC and integration checks are run.
Return of derived data and documentation
Where appropriate, derived results, harmonized documentation, and QC summaries are returned to contributing cohorts to support their own research and reporting.
Note: The exact accession process remains under development. Details will be refined as governance structures and infrastructure are established, and will be released in forthcoming cohort participation documentation.