This trial examines approaches to identify and care for individuals with inherited cancer syndrome. The purpose of this study is to offer no cost genetic testing to the general public. Researchers hope to learn the value of providing broad, public-wide testing for high risk cancer types (like hereditary breast and ovarian cancer or Lynch syndromes) instead of only testing people whose families are known to be high risk.
ALL COHORTS: 18 years of age or older
Retrospective COHORT A: Per HIPAA waiver, Retrospective Cohort A will not actively consent
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
None
Single group
Biospecimen Collection
Procedure/SurgeryUndergo collection of saliva sample
Genetic Counseling
Other interventionReceive genetic counseling if testing results are positive
Genetic Testing
Other interventionUndergo genetic testing
Survey Administration
Other interventionComplete a survey
Effectiveness and sustainability of heritable cancer syndrome testing in the two novel testing populations
Determine the costs and effectiveness, specifically Quality Adjusted Life Years (QALYs) associated with genetic screening models based on Cohorts B and C to estimate incremental cost-effectiveness ratio (ICER) and show that the costs per QALY are below the acceptable cost effectiveness threshold.
Adherence to standard of care for hereditary breast and ovarian cancer (HBOC) and Lynch syndromes
For Lynch syndrome we identify compliance as colonoscopy in past two years and bilateral salpingo-oophorectomy (BSO ) after child-bearing age. For HBOC, compliance is defined as breast imaging in past year or risk reducing surgery at any point in women.
Merged risk reduction strategies of bilateral salpingo-oophorectomy (BSO) or bilateral mastectomy and imaging
The merged risk reduction strategies of BSO or bilateral mastectomy and the imaging are treated as evidence of risk reducing behavior.
Cascade screening rate among Lynch or HBOC positive carriers
Will conduct negative binomial regression model and non-inferiority will be determined by rate ratio and its 95% confidence interval (CI).
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OHSU Knight Cancer Institute
Lead sponsor
National Cancer Institute (NCI)
Collaborator
Oregon Health and Science University
Collaborator
