Identifying and Caring for Individuals With Inherited Cancer Syndrome

Launched by OHSU KNIGHT CANCER INSTITUTE · Jul 28, 2020

Keywords

ClinConnect Summary

This clinical trial is focused on finding better ways to identify and support people who have inherited cancer syndromes, such as BRCA1/2-related breast and ovarian cancer and Lynch syndrome. The main goal is to provide free genetic testing to the public to see if this broad approach can help identify individuals at high risk for certain cancers, even if they don’t have a family history of these conditions. By understanding the benefits of widespread testing, researchers hope to improve early detection and care for those at risk.

To participate in this trial, you need to be at least 18 years old. There are three groups you could join, depending on your health history and whether you have been diagnosed with certain types of cancer. Participants may be asked to provide a DNA sample and complete some surveys. The trial is currently recruiting participants, and everyone involved will receive support and guidance throughout the process. If you or a loved one is interested in understanding your cancer risk, this could be a valuable opportunity to learn more.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • 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
• • Retrospective COHORT A: Patients have genetic variants that include BRCA1, BRCA2 and/or Lynch syndrome
• • COHORT A: Per Health Insurance Portability and Accountability Act (HIPAA) waiver, Cohort A returns survey as consent
• • COHORT A: Patients may or may not be diagnosed with cancer
• • COHORT A: Patients have received genetic counseling in the past 1 - 2 years
• • COHORT A: Patients have genetic variants that include BRCA1, BRCA2 and/or Lynch syndrome
• • COHORT A: INCLUSIVE of no contact list to exclude from Cohort B
• • COHORT B: Creation of secure Medable account
• • COHORT B: Consent to this project, either hard or electronic signature
• • COHORT B: Consent to the Healthy Oregon Project (HOP) repository, either hard or electronic signature
• • COHORT B: Choosing to submit a deoxyribonucleic acid (DNA) sample
• • COHORT B: Patients diagnosed with any National Cancer Institute (NCI)-reportable cancers, including ductal carcinoma in situ (DCIS) and/or in situ breast cancer
• • COHORT B: Must have had an encounter within past twelve months
• • COHORT B: Exclude Cohort A
• • COHORT C: Creation of secure Medable account
• • COHORT C: Consent to this project, either hard or electronic signature
• • COHORT C: Consent to the HOP repository, either hard or electronic signature
• • COHORT C: Choosing to submit a DNA sample