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NCT Number: NCT04291651

UCSF PANC Cyst Registry

Pancreatic cysts are found incidentally on 15-50% of CT and MRIs for all indications and their prevalence is increasing. Many of these cysts may be precursors to pancreatic cancer, and thus pose a substantial risk, however, the vast majority are benign. Increased detection of pancreatic cysts provides an opportunity to diagnose pancreatic malignancy at an early, curable stage yet also increases the potential to over-treat clinically insignificant lesions. This presents a clinical challenge to prevent unnecessary resection of indolent disease, with associated risks of infections, bleeding, diabetes, and costly disability. Unfortunately, there is little information on the epidemiology and natural history of pancreatic cysts to help guide management.

Recruiting

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Key information

Conditions

Pancreatic Cyst Adenoma Cystadenoma Cystadenoma, Serous Cysts Digestive System Diseases Digestive System Neoplasms Endocrine Gland Neoplasms Endocrine System Diseases Intraductal Papillary Mucinous Neoplasm Mucinous Cyst Mucocele Neoplasms Neoplasms by Histologic Type Neoplasms by Site Neoplasms, Cystic, Mucinous, and Serous Neoplasms, Ductal, Lobular, and Medullary Neoplasms, Glandular and Epithelial Pancreatic Cancer Pancreatic Diseases Pancreatic Ductal Adenocarcinoma Pancreatic Intraductal Neoplasms Pancreatic Intraductal Papillary Mucinous Neoplasm Pancreatic Neoplasms

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

University of California, San Francisco

San Francisco, California, 94143, United States

Location status: Recruiting

Location contact

Charysa Santos, BS

CONTACT

[email protected]

415-514-6914

Kimberly Kirkwood, MD

PRINCIPAL_INVESTIGATOR

M.D.

CONTACT

[email protected]

877-827-3222

Paige M Bracci, PhD, MPH, MS

PRINCIPAL_INVESTIGATOR

About this study

This study develops a large, prospectively managed, electronic, patient-directed pancreatic cyst registry based at UCSF. The UCSF Pancreatic Cystic Lesions Registry (PANC Cyst) will facilitate work to improve clinical care and understanding of pancreatic cysts by prospective follow-up of patients with cystic lesions, especially the diagnostically challenging small cysts, to identify factors related to cyst formation and progression to malignancy. Longitudinal data capture that includes clinical outcomes will also enable us to more precisely define anatomic, radiographic and biomarker information that can be used to differentiate populations of patients for whom surgery is indicated, surveillance is warranted, or no further evaluation is necessary.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • The inclusion criteria for this study are intentionally broad. Eligible patients for prospective enrollment will include
  • Adults ≥ 30 years of age
  • Have a radiographic or endoscopic diagnosis of at least one pancreatic cysts regardless of treatment status,
  • No history of pancreatic cancer,
  • Can speak and read English,
  • Have access to a computer or mobile device (~95% of U.S. population); and
  • Are able to complete an electronic informed consent.

Exclusion criteria

  • Patients who don't speak English,
  • Don't have access to a computer or mobile device; or
  • Patients who have a cancer diagnosis.

Treatment and study plan

Survey

Other

There are no study-specific interventions, as this is a prospective registry. However, patients will be asked to complete approximately 1-2 hours worth of surveys on things such as demographics, medical and surgical history, and pancreatic cyst-specific questionnaires.

Primary outcomes

  1. Cancer

    Time frame: 1-10 years

    While not the primary outcome measure, the development of cancer from a pancreatic cyst is a critically important study endpoint, which the investigators do not expect to be frequent occurrence.

  2. Indolency

    Time frame: 1-10 years

    If a patient with a pancreatic cyst experiences no or minimal change in size, and no development of worrisome or high-risk stigmata (Tanaka 2017), this will be considered to be an indolent lesion. Most patients will fall under this category.

Study contacts

Contact information is provided by the study sponsor or research team.

Charysa Santos, BS

CONTACT

[email protected]

415-514-6914

Kimberly S Kirkwood, MD

CONTACT

[email protected]

415-502-5577

Sponsors and collaborators

Lead sponsor

University of California, San Francisco

Other

Registry information

Official study title

Population-Based Analysis of Neoplastic Changes in Cystic Lesions of the Pancreas.

Acronym: UCSF PCR

Important dates

Study start
2019
Primary completion
2030
Study completion
2030
First posted
Mar 2, 2020
Registry last updated
Sep 18, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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