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.
Highlights
Population-based cancer registries were first established in Europe and North America in the 1940s and 1950s to generate statistics on the incidence of cancer in a defined population.[1]
JPTR registrants are classified as either (a) familial pancreatic cancer (FPC),[3] (b) sporadic pancreatic cancer (SPC), which is consistent with other established cancer registries, or (c) control group
The majority of registrants (67%) have SPC, 13% are FPC cases, nonaffected family members (NAFMs) constitute
Summary
Population-based cancer registries were first established in Europe and North America in the 1940s and 1950s to generate statistics on the incidence of cancer in a defined population.[1]. There are numerous types of cancer registries including those that are nationally, state, and regionally mandated; cancer-type specific; those focused on end results; and voluntary hospital-based registries. Since years lived after a cancer diagnosis is a crude measure of outcome, refined measures have evolved that include disease-free survival and evaluating the quality of life of participants.1The Jefferson Pancreas Tumor Registry ( JPTR), a voluntary, hospital-. Part of these data were presented as a poster at the Pancreas Club meeting, May 20–21, 2016, San Diego, CA, and as an abstract in the Oncology Nursing Form, May, 2016.
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