University of California, San Francisco
This is a prospective observational multi-center pilot study of germline testing for participants receiving care at University of California participating locations with a new or existing diagnosis of Pancreatic Neuroendocrine Neoplasms (PanNEN). This protocol is an extension of existing Genetic Testing Station efforts at University of California, San Francisco (UCSF)
Pancreatic Neuroendocrine Neoplasm
Hereditary Cancer Panel
PRIMARY OBJECTIVE: I. To assess the frequency of germline mutations in patients with PanNEN. SECONDARY OBJECTIVES: I. To assess the rates of different types of germline mutations in patients PanNEN. II. To assess the rates of different types of variants of uncertain significance in patients with PanNEN. III. To estimate the rate of completion of genetic testing in patients who are offered prospective germline testing. EXPLORATORY OBJECTIVES: I. To examine attitudes of patients who have completed germline testing. II. To explore reasons for declining germline testing. III. In patients with repeat germline testing, compare the frequency of germline alteration between tests. IV. Assess the relationship between germline pathogenic variants and somatic mutations in PanNEN. OUTLINE: Potential eligible participants will be identified via chart review and invited to consent to the study. Study participants who agree to prospective testing and have not had previous large panel germline testing will watch an informational video about germline testing and be offered testing with University of California, San Francisco's (UCSF) Expanded Hereditary Cancer Panel. Study participants who decline germline testing will be asked to answer a one-question Declination Survey. Results will be shared with participants and their providers per the standard of practice at each participating study site. All participants who decided to receive germline testing will be asked to complete a decision survey.
| Study Type : | OBSERVATIONAL |
| Estimated Enrollment : | 300 participants |
| Official Title : | Genetic Predisposition Testing Program for Pancreatic Neuroendocrine Neoplasms |
| Actual Study Start Date : | 2023-04-07 |
| Estimated Primary Completion Date : | 2025-12-31 |
| Estimated Study Completion Date : | 2025-12-31 |
Information not available for Arms and Intervention/treatment
| Ages Eligible for Study: | 18 Years |
| Sexes Eligible for Study: | ALL |
Want to participate in this study, select a site at your convenience, send yourself email to get contact details and prescreening steps.
RECRUITING
University of California, Los Angeles
Los Angeles, California, United States, 90095
RECRUITING
Univeristy of California, San Diego
San Diego, California, United States, 92093
RECRUITING
University of California, San Francisco
San Francisco, California, United States, 94143