Status:
ACTIVE_NOT_RECRUITING
Engaging Adolescents in Decisions About Return of Genomic Research Results
Lead Sponsor:
Children's Hospital Medical Center, Cincinnati
Collaborating Sponsors:
University of Cincinnati
Conditions:
Genetic Screening
Adolescent
Eligibility:
All Genders
13-99 years
Phase:
NA
Brief Summary
Recent recommendations to return children's results for adult-onset conditions to parents anytime whole exome or genome sequencing is performed, as well as growing expectations to return research resu...
Detailed Description
The purpose of this study is to assess assenting and consenting adolescents' choices about learning genomic research results. The investigator will refine existing decision tools and processes to prom...
Eligibility Criteria
Inclusion
- Assenting adolescents (13-17 years)
- Consenting adolescents (18-21 years)
- Parent / legal guardian of assenting or consenting adolescent
- Ability to participate in remote study visits, if applicable
Exclusion
- Those who do not meet inclusion criteria
- Those who do not communicate in English
- Individuals with developmental disabilities that interfere with their ability to make independent decisions
Key Trial Info
Start Date :
March 10 2020
Trial Type :
INTERVENTIONAL
Allocation :
ACTUAL
End Date :
November 30 2026
Estimated Enrollment :
787 Patients enrolled
Trial Details
Trial ID
NCT04481061
Start Date
March 10 2020
End Date
November 30 2026
Last Update
July 23 2025
Active Locations (2)
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1
Michelle McGowan
Rochester, Minnesota, United States, 55902
2
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States, 45229