Penn Biobank Return of Research Results Program

Abramson Cancer Center at Penn Medicine260 enrolled

Overview

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.

Study Type

INTERVENTIONAL

Allocation

RANDOMIZED

Purpose

HEALTH_SERVICES_RESEARCH

Masking

NONE

Enrollment

260

Conditions

Cancer Cardiovascular Diseases Hereditary Cancer Hereditary Cardiac Amyloidosis

Interventions

e-Health (web-based) disclosure portalBEHAVIORAL

Patient uses secure web-based portal to access genetic research results

Provider mediated disclosureBEHAVIORAL

Patient has disclosure of genetic research result by a provider (genetic counselor)

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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

Locations (1)

University of Pennsylvania

Philadelphia, Pennsylvania, United States

Outcomes

Primary Outcomes

Completion of surveys

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

Time frame: Baseline survey prior to disclosure of results, and then two post-disclosure surveys at 2-7 days and 6 months

Data from ClinicalTrials.gov

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