for people ages 18 years and up (full criteria)
at San Francisco, California and other locations
study started
completion around
Principal Investigator
by Emily Bergsland, MD
Headshot of Emily Bergsland
Emily Bergsland



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)



  1. To assess the frequency of germline mutations in patients with PanNEN.


  1. 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.


  1. 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.


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.


Pancreatic Neuroendocrine Neoplasm, Genetic Assay, Biomarkers, Neoplasms, Neuroendocrine Tumors, Islet Cell Adenoma, Disease Susceptibility, Genetic Predisposition to Disease, Hereditary Cancer Panel


You can join if…

Open to people ages 18 years and up

  • Histologically confirmed PanNEN.
  • New and existing PanNEN participants will be eligible for testing (any grade, any stage, any age > 18 years).
  • Participants willing and able to comply with the study procedures.

You CAN'T join if...

  • Inability to provide informed consent.
  • For participants without adequate prior germline testing: Inability to speak/read the languages supported by the genetic testing station (GTS) --This is evolving, but currently includes English, Spanish, Farsi, Russian, or with Chinese subtitles (see most recent version of the consent for updated list).


  • UCSF accepting new patients
    San Francisco California 94143 United States
  • University of California, Los Angeles not yet accepting patients
    Los Angeles California 90095 United States
  • Univeristy of California, San Diego not yet accepting patients
    San Diego California 92093 United States

Lead Scientist at UCSF

  • Emily Bergsland, MD
    Emily Bergsland, MD is a medical oncologist at the University of California, San Francisco (UCSF) Helen Diller Family Comprehensive Cancer Center who specializes in gastrointestinal malignancies. She is a Professor of Medicine, Director of the UCSF Center for Neuroendocrine Tumors, and serves as Associate Director for Education for the UCSF Helen Diller Family Comprehensive Cancer Center.


accepting new patients
Start Date
Completion Date
University of California, San Francisco
Study Type
Expecting 300 study participants
Last Updated