NCT03832985CompletedEarly phase 1
Pediatric Reporting of Adult-Onset Genomic Results
Reporting Adult-Onset Genomic Results to Pediatric Biobank Participants and Parents
Source: ClinicalTrials.gov · Last updated 9 Apr 2026
Brief summary (registry, in English)
The Investigators will conduct a longitudinal, mixed-methods cohort study to assess primary and secondary psychosocial outcomes among MyCode adolescent participants and their parents, and health behaviors of children who received an adult- or pediatric-onset genomic result. Data will be gathered via quantitative surveys using validated measures of distress, family functioning, quality of life, body image, perceived cancer/heart disease risk, genetic counseling satisfaction, genomics knowledge, and adjustment to genetic information; qualitative interviews with adolescents and parents; and electronic health records review of children's initiation of risk reduction behaviors. The investigators will also conduct empirical and theoretical legal research to examine the loss of chance doctrine and its applicability to genomic research.
- Status (registry)
- Completed
- Phase (registry)
- Early phase 1
- Study type
- Interventional
- Enrollment
- 162 (actual)
- First submitted
- 4 Feb 2019
- Start date
- 25 Nov 2020
- Primary completion date
- 31 Oct 2024
- Lead sponsor
- Geisinger Clinic
- NCT number
- NCT03832985
What you commit to
- Study type: Interventional · Early phase 1
- Participants enrolled: 162
- From 25 Nov 2020 to the primary completion date, 31 Oct 2024
- 1 site in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other illness
- Individuals who have already had genetic counseling for any of the actionable target conditions as part of their routine clinical care.
- Individuals who have already had genetic counseling for any of the actionable target conditions through their participation in another research study.
Who the study is looking for
- Any pediatric MyCode participant (ages 0-17) OR
- Parent of a pediatric MyCode participant who has given assent to participate in this study.
Sex: All · Accepts healthy volunteers
Sites (1)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Geisinger Coordinator of this site? Confirm its status | Danville | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.