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Penn Biobank Return of Research Results Program

Not Applicable
Completed
Conditions
Hereditary Cancer
Cancer
Hereditary Cardiac Amyloidosis
Cardiovascular Diseases
Registration Number
NCT04242667
Lead Sponsor
Abramson Cancer Center at Penn Medicine
Brief Summary

The overall goal of the proposed research is to assess the feasibility of a randomized study evaluating the non-inferiority of an electronic Health (e-Health) delivery alternative (e.g. private web portal) as compared to return of actionable genetic research results with a genetic counselor.

Detailed Description

Not available

Recruitment & Eligibility

Status
COMPLETED
Sex
All
Target Recruitment
260
Inclusion Criteria
  1. Consented participant in University of Pennsylvania Biobank who previously submitted a DNA sample for research testing
  2. English speaking
  3. Aged 18 years or older
  4. Agreed to be re-contacted in the future or did not indicate a preference on future contact regarding research results
  5. Have an actionable mutation or have been selected as a control participant
  6. Have not previously received actionable results of clinical genetic testing
Exclusion Criteria
  1. Deceased assessed by electronic medical record, death index or identified after contact
  2. Evidence in the electronic medical record that the subject has already received the same actionable result through clinical genetic testing

Study & Design

Study Type
INTERVENTIONAL
Study Design
PARALLEL
Primary Outcome Measures
NameTimeMethod
Completion of surveysBaseline survey prior to disclosure of results, and then two post-disclosure surveys at 2-7 days and 6 months

Participant will self-complete surveys to collect psychological and knowledge outcomes

Secondary Outcome Measures
NameTimeMethod

Trial Locations

Locations (1)

University of Pennsylvania

🇺🇸

Philadelphia, Pennsylvania, United States

University of Pennsylvania
🇺🇸Philadelphia, Pennsylvania, United States

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