Precious Data: Interim Report from the Jefferson Pancreas Tumor Registry

Abstract

Purpose: The Jefferson Pancreas Tumor Registry (JPTR) is a voluntary hospital-based registry of persons with pancreas and related periampullary cancers, premalignant lesions, and nonaffected family members (NAFMs). The ultimate goals of the JPTR are to provide a link between family history, gene mutations, and precision medicine therapy, and to identify high-risk NAFMs for potential surveillance screening. Methods: The JPTR is an Institutional Review Board approved longitudinal epidemiological study housed in the Department of Surgery at Thomas Jefferson University Hospital. Individuals who met the eligibility criteria and signed informed consent provide information on hereditary conditions, family history of cancers, environmental exposures, and occupational risk factors. Data are collected using a self-administered questionnaire, the electronic medical record, and the molecular analysis of tumor specimens. Results: Established in 2008, >725 persons have enrolled in the JPTR. The cohort is mostly composed of sporadic pancreas cancer, with 13% of enrollees having familial pancreas cancer and a control group comprising nonaffected persons. Data from the registry have been utilized to inform clinical studies, molecular investigations, and to shed light on and gain insight into the lived experience of persons with these conditions. Conclusion: The JPTR contains precious qualitative data and is an invaluable repository of information about persons with pancreatic and related tumors.

Keywords: cancer registry; family history; pancreatic cancer; quality of life; risk factors.