Genetic testing program for pancreatic neuroendocrine tumors

Genetic Predisposition Testing Program for Pancreatic Neuroendocrine Neoplasms

University of California, San Francisco · NCT05746182

This study is testing a genetic testing program for people with pancreatic neuroendocrine tumors to see how often certain inherited changes occur and to understand what patients think about genetic testing.

Quick facts

Study typeObservational
Enrollment300 (estimated)
Ages18 Years and up
SexAll
SponsorUniversity of California, San Francisco (other)
Locations3 sites (Los Angeles, California and 2 other locations)
Trial IDNCT05746182 on ClinicalTrials.gov

What this trial studies

This observational pilot program focuses on assessing germline mutations in patients diagnosed with pancreatic neuroendocrine neoplasms (PanNEN) across multiple University of California locations. Participants will be invited to undergo genetic testing to identify potential hereditary factors associated with their condition. The study aims to evaluate the frequency and types of germline mutations, as well as the completion rates of genetic testing among eligible patients. Additionally, it will explore patient attitudes towards genetic testing and reasons for declining participation.

Who should consider this trial

Good fit: Ideal candidates include adults over 18 years with a histologically confirmed diagnosis of pancreatic neuroendocrine neoplasms, regardless of grade or stage.

Not a fit: Patients who have previously undergone extensive germline testing or those with active hematologic malignancies may not benefit from this study.

Why it matters

Potential benefit: If successful, this program could enhance understanding of genetic predispositions in pancreatic neuroendocrine neoplasms, leading to improved patient management and targeted therapies.

How similar studies have performed: Other studies have shown promise in genetic testing for cancer predisposition, suggesting that this approach may yield valuable insights.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

1. Histologically confirmed PanNEN.

   a. The diagnostic biopsy may have been taken from any site (primary or metastatic).
2. New and existing PanNEN participants will be eligible (any grade, any stage, any age \> 18 years).
3. Participants willing and able to comply with the study procedures.

Exclusion Criteria:

1. Inability to provide informed consent.
2. For participants who have not had prior testing with a dedicated germline pane of at least 80 genes:

   1. Inability to speak/read a language supported by the germline testing station (GTS). The supported languages currently include English, Korean, Japanese, Vietnamese, Russian, Tagalog, Farsi, Spanish, Cantonese, Mandarin, and Arabic).
   2. Active hematologic malignancy.
   3. History of allogenic bone marrow transplant or stem cell transplant.

Where this trial is running

Los Angeles, California and 2 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.

View on ClinicalTrials.gov →

Conditions: Pancreatic Neuroendocrine Neoplasm, Genetic Assay, Biomarkers

Last reviewed 2026-05-15 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.