University of Nebraska Medical Center

Pancreatic Cancer Collaborative Registry

The Pancreatic Cancer Collaborative Registry, operating under the umbrella of the integrated Cancer Data Repository for Cancer Research, is aimed to advance comprehensive studies of risk factors of pancreatic cancer development and progression and to enable the design of novel strategies for prevention, screening, early detection and personalized treatment of pancreatic cancer.

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Centers with expertise in pancreatic cancer epidemiology, genetics, biology, early detection, and patient care can collaborate by using the registry as a platform for cohort and population studies.

Institutional IRB approval and patient informed consent must be obtained.

The purpose of the project is to develop a national pancreatic cancer resource, which collects comprehensive demographic information, medical and family history, dietary and environmental exposure history as well as biospecimens from pancreatic cancer patients and their family members. One of the major goals of the Pancreatic Cancer Collaborative Registry is to help researchers identify what specifically causes pancreatic cancer, and possibly identify those individuals/families that are at increased risk for pancreatic as well as other cancers. Researchers may also identify those individuals who might benefit from screening measures to detect pre-cancerous changes at an earlier and potentially more treatable stage.

The registry is committed to protecting each individual’s confidentiality/privacy online. Security issues are addressed using recommendations of the Healthcare Information and Management Systems Society Privacy and Security Toolkit and the electronic information security standards regarding the collection, use, and retention of data mandated by the Federal Health Insurance Portability and Accountability Act.