Current Follow-Up Research Opportunities
The LIVING Study
Who can join: Families who enrolled in the BabySeq1 Project from 2014-2019
Goal: To learn about the impacts of newborn sequencing as children grow up (10 years after results disclosure)
What’s involved? Survey ($50 compensation per parent), optional data sharing, and interviews of some families ($50 compensation per family)
Current status: Actively recruiting at 10-year follow-up (Jan 2026 - April 2028)
The SERVICE Study
Who can join: Families who joined the BabySeq2 Project from 2023 - 2025 AND received a positive result from genetic testing
Goal: To learn about how families access services after genetic testing
What’s involved? BabySeq2 survey data sharing, potential additional surveys and interviews.
Current status: Pending data sharing approval
The Lifetime Genome
Who can join: Families who joined the BabySeq1 Project or BabySeq2 Project AND had sequencing
Goal: This study is part of a broader project looking at the ethical, legal, and social questions around using genomic information across a person's lifetime.
What’s involved? Interview ($50 compensation per family), survey
Current status: Limited recruitment to begin March-April 2026
BabySeq Experiences Book
Who can join: Families who joined the BabySeq1 Project or BabySeq2 Project
Goal: To learn about what it was like to participate in BabySeq, and how it has affected your child and your family.
What’s involved? Interview ($100 compensation per family)
Current status: Planning recruitment
Preeclampsia genomics
Who can join: Families who joined the BabySeq2 Project AND had genome sequencing, with or without a history of preeclampsia in pregnancy
Goal: Investigate variants linked to pre-eclampsia in GWAS studies to see if these are enriched in children whose mothers had pre-eclampsia in pregnancy.
What’s involved? De-identified genomic data sharing
Current status: Pending IRB approval