Lowers barriers to entry
Shared infrastructure reduces the burden of navigating separate access processes, agreements, and analysis environments for each cohort.
In Development
Controlled Access
Global Academic Initiative
Building shared infrastructure for twin, adoption, and family-based science
The Extended Twin, Adoption, and Family Data Commons is an early-stage global academic initiative working toward a secure, controlled-access resource that integrates genetically informative family cohorts, harmonized phenotypes, and genomic data to support more powerful, transparent, and reproducible research.
Planning-Stage Initiative
Current status
The ETAF Data Commons remains in the planning stage. Here is a brief summary of where things stand.
Working group
A working group has met monthly during 2025–2026 and convened in person in Boulder, Colorado on June 1–4, 2026. The group has developed the scientific rationale, initial governance thinking, and a funding strategy.
Funding
An NIH PF5 application was submitted in May 2026. If funded, the seed phase would support initial infrastructure development and a small number of pilot cohorts. Additional seed-funding opportunities are under consideration.
Manuscript & protocol
A manuscript describing the scientific rationale and proposed implementation has been drafted and is expected to be finalized in 2026. An ETAF Data Commons Protocol has also been drafted to define a future path for cohort participation.
Cohort rollout
Broader rollout, including a call for cohort participation, is expected only after seed funding is obtained and initial infrastructure has been tested. Calls to include new cohorts will begin once preliminary funding and infrastructure are established.
The Field Is Ready
Community momentum
A community survey of the twin- and family-register world suggests that the phenotypic and genotypic resources for global expansion already exist.
73
Registers surveyed
32
Countries represented
16
First-wave responders
20
Letters of support
Important note regarding letters of support: Letters of support indicate enthusiasm, interest, or advisory willingness. They are not participation agreements and do not imply that data will be transferred, that consent or governance review has been completed, or that a cohort has agreed to participate in the ETAF Data Commons.
Why This Is Needed
The scientific case for shared infrastructure
Twin, adoption, and extended-family cohorts have delivered decades of insight into genetic and environmental influences on human behavior, health, and development. Yet these datasets remain scattered across institutions, governed independently, and difficult to combine at scale.
Harmonizes phenotypes
Harmonization pursued where scientifically appropriate; cohort-specific measures preserved when harmonization would reduce scientific value.
Increases power and supports replication
Combining independently collected cohorts enables more robust, reproducible findings that no single cohort can support alone.
Enables new genomic methods
Within-family GWAS, indirect genetic effects models, and extended pedigree analyses require large samples that no single cohort can provide.
Explore
Explore the initiative
Learn more about the science, how to get involved, and how the initiative is being built.
For Cohort Leaders
Learn how twin, adoption, and family study leaders can contribute to a shared scientific resource — and what participation might offer in terms of scientific reach, harmonization support, and governance input.
Cohort participationFor Researchers
Discover the scientific questions the resource is designed to support — from within-family genomics and assortative mating to developmental change and cross-cohort replication. Future data access will be controlled and project-based.
Research opportunitiesAbout
The scientific case for shared infrastructure, the data flow pipeline, and research use cases.
Learn moreGovernance & Access
How the resource is designed around controlled access, consent, and responsible data use.
Our approachTeam
Leadership, working groups, and the people building the initiative's scientific and governance foundations.
Meet the teamContact
Questions about cohort participation, funding, data access, or collaboration? Get in touch.
Get in touchGet involved or stay informed
The initiative is in early development and welcomes conversations with cohort leaders, researchers, funders, and collaborators.