Study of Cascade Genetic Testing for Hereditary BreastOvarian Cancer and Lynch Syndrome in Switzerland Tracking Mutation Carriers and Their Family Members to Improve Cancer Prevention

What this Trial Is About

Researchers are studying hereditary breast and ovarian cancer HBOC and Lynch syndrome LS, which together account for about 30% of new cancer cases in Switzerland. The study focuses on genetic testing for these hereditary cancers to identify mutation carriers and improve prevention through early detection and management. Despite available genetic services, many mutation carriers and their family members do not use these services due to care coordination and communication challenges. The study uses a family-based cohort approach called CASCADE genetic screening, involving mutation carriers, their blood relatives who test negative, and untested relatives. It aims to survey index patients with HBOC or LS and their family members to understand their cancer status, genetic testing use, care coordination needs, communication patterns, and quality of life. The study will also explore the acceptability of a family-based communication and decision support intervention. Participants will be involved in surveys assessing their cancer and genetic mutation status, surveillance practices, psychosocial needs, communication with providers and family, and willingness to engage in genetic services. The primary outcome is establishing the CASCADE cohort within 12 months, with secondary outcomes including cancer surveillance practices. The study is observational and ongoing, with participants living in Switzerland and able to communicate in German, French, Italian, or English.

Cascade Genetic Testing for Hereditary Breast/Ovarian Cancer and Lynch Syndrome in Switzerland