Long Term Follow-up of Mesothelioma Patients and Their Family Members With Germline Mutations in BAP1 and Other Genes

What this Trial Is About

Researchers are studying people with inherited germline mutations in the BAP1 gene and other related genes that may increase the risk of mesothelioma and other cancers. The goal is to understand how cancer might develop in people carrying these mutations and to characterize the natural and clinical history of affected individuals and their families. This observational study involves participants aged 2 years and older who have these genetic mutations or family histories of mesothelioma. Participants are divided into two groups: those with mesothelioma and a germline mutation (NIH Group) and those without mesothelioma who can choose to be in the NIH Group or Remote Group. The NIH Group undergoes a thorough baseline visit lasting up to four days, including physical exams, blood tests, scans, skin and eye exams, tumor tissue evaluation, and optional biopsies. Follow-up visits occur once or twice a year for ongoing assessments. Remote Group participants have medical histories reviewed by phone, tumor tissue tested if available, and annual phone contact. Throughout the study, participants provide medical and family histories and may be asked to inform relatives who could be at risk. Researchers monitor cancer incidence and frequency as the primary outcome. Participants undergo physical exams, lab tests, imaging scans, and other evaluations to track health status. This long-term follow-up aims to better understand the link between germline mutations and cancer development, with ongoing safety and health monitoring.

Long Term Follow-up of Mesothelioma Patients and Their Family Members With Germline Mutations in BAP1 and Other Genes