UCSF PANC Cyst Registry (UCSF PCR)

University of California San Francisco (UCSF)

Status: Enrolling

Conditions: Mucinous Cyst; Pancreatic Diseases; Pancreatic Cyst; Pancreatic Intraductal Papillary Mucinous Neoplasm; Pancreatic Ductal Adenocarcinoma; Intraductal Papillary Mucinous Neoplasm; Pancreatic Cancer; Pancreatic Neoplasms

Treatments: Other: Survey

Study type: Observational

Funder types: Other

Identifiers

NCT04291651

214521

Details and patient eligibility

About

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.

Full 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.

Enrollment: 4,000 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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.

Trial design

4,000 participants in 2 patient groups

Retrospective

Description:

The registry will be populated with a retrospective cohort of patients previously identified as having pancreatic cysts.

Prospective

Description:

The prospectively enrolled patients in this study are the primary population of interest.

Treatment:

Other: Survey