No phaseActive, not recruiting
Penn Medicine Biobank Return of Results Program (ROR)
A Randomized Study of Web Versus Genetic Counselor Return of Actionable Genetic Research Results to Biobank Participants
- Sponsor
- Abramson Cancer Center at Penn Medicine (Academic or other)
- Enrolment
- 2,500 planned
- Conditions
- Genetic Disease; Cancer; Cardiovascular Diseases
- Interventions
- private web-portal eHealth disclosure of genetic results; eHealth education intervention (web or chatbot)
- Ages
- adults, older adults
- Registry
- NCT06089954
From the registry
The goal of this hybrid type 1 effectiveness-implementation study is to evaluate and compare different ways of delivering genetic research results to participants. The main questions the study aims to answer are: * Is sharing actionable genetic research results with participants through a multimedia patient-informed eHealth intervention (e.g. patient portal) no worse than sharing results by telephone or videoconference with a genetic counselor? * Will research participants access an eHealth educational intervention or chatbot education to learn about research results being offered and the option to decline learning their individual research results and how frequently participants choose to decline actionable research results? * Who benefits less and more from digital intervention with return of actionable research results and what barriers exist to using these tools for return of research results outside this study? Participants in the biobank will be offered digital tools to learn about research results being offered and the option to decline receiving these results. Those who…
Primary outcomes
- Understanding of Genetic Information
- Reactions to Genomic Information
- Behavioral Use of Genomic Information