Actively Recruiting
Approaches to Identify and Care for Individuals With Inherited Cancer Syndromes
Led by OHSU Knight Cancer Institute · Updated on 2026-01-23
27500
Participants Needed
2
Research Sites
N/A
Total Duration
On this page
Sponsors
O
OHSU Knight Cancer Institute
Lead Sponsor
N
National Cancer Institute (NCI)
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are evaluating ways to identify and care for individuals with inherited cancer syndromes, such as hereditary breast and ovarian cancer and Lynch syndromes. The study aims to assess the value of offering broad genetic testing to the public at no cost, rather than limiting testing to those with known high-risk family histories. It also compares the effectiveness and sustainability of heritable cancer syndrome testing in two new screening populations against current guidelines. Participants provide saliva samples for genetic testing. If the test results are positive, they receive genetic counseling. Additionally, participants complete surveys about cancer prevention, screening, and treatment. The study includes multiple cohorts, some retrospective and others enrolling new participants via a secure app, with follow-up to assess adherence to guidelines and cost-effectiveness of the screening models. During the study, researchers monitor outcomes such as effectiveness and sustainability of testing, adherence to recommended cancer screening and prevention strategies, and family cascade screening rates over up to five years. Participants are involved in genetic testing, counseling if needed, and survey completion. The research team collects data to evaluate quality-adjusted life years and cost-effectiveness of the genetic screening approaches.
CONDITIONS
Brief Title
Identifying and Caring for Individuals With Inherited Cancer Syndrome
Who Can Participate
Eligibility Criteria
You may qualify if you...
- 18 years of age or older
- Retrospective Cohort A: Patients may or may not be diagnosed with cancer
- Retrospective Cohort A: Patients have received genetic counseling in the past 5 years
- Retrospective Cohort A: Patients have genetic variants that include BRCA1, BRCA2, and/or Lynch syndrome
- Cohort A: Patients have received genetic counseling in the past 1 to 2 years
- Cohort A: Patients have genetic variants that include BRCA1, BRCA2, and/or Lynch syndrome
- Cohort B: Creation of a secure Healthy Oregon Project (HOP) app account
- Cohort B: Consent to this project and the HOP repository
- Cohort B: Choosing to submit a DNA sample
- Cohort B: Patients diagnosed with any National Cancer Institute-reportable cancers, including ductal carcinoma in situ or in situ breast cancer
- Cohort B: Must have had a healthcare encounter within the past 12 months
- Cohort C: Creation of a secure HOP app account
- Cohort C: Consent to this project and the HOP repository
- Cohort C: Choosing to submit a DNA sample
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 5 years
Participants undergo genetic testing using saliva samples to identify heritable cancer syndromes. Those with positive results receive genetic counseling and complete a survey about cancer prevention, screening, and treatment.
1 visit for sample collection and survey; additional visits for genetic counseling if testing is positive
Trial Site Locations
Total: 2 locations
1
Providence Portland Medical Center
Portland, Oregon, United States, 97213
Actively Recruiting
2
OHSU Knight Cancer Institute
Portland, Oregon, United States, 97239
Actively Recruiting
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
NA
Model
SINGLE_GROUP
Primary Purpose
SCREENING
Number of Arms
1
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