UCSF PANC Cyst Registry
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: Survey.
- Who it may be relevant to
- Registry conditions: Pancreatic Cyst, Pancreatic Neoplasms, Pancreatic Cancer, Pancreatic Diseases. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Population-Based Analysis of Neoplastic Changes in Cystic Lesions of the Pancreas.
Overview
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.
Detailed description
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.
Interventions
- Other Survey
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 outcome measures
- Cancer [Time frame: 1-10 years]
- Indolency [Time frame: 1-10 years]
Eligibility criteria
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.
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Other
Study locations
United States · 1 center
- University of California, San Francisco — San Francisco
Identifiers
NCT: NCT04291651 · 214521