PCCR, operating under the umbrella of the integrated Cancer Data Repository for Cancer Research (iCaRe2), is designed to unite centers with expertise in pancreatic cancer epidemiology, genetics, biology, early detection and patient care to facilitate rapid and uniform collection of critical information and biological samples to be used in developing prevention and treatment strategies against pancreatic cancer.
This resource is available to all participating institutions that desire the appropriate computing support. Institutional IRB approval and patient informed consent must be obtained.
The purpose of the project is to develop a national pancreatic cancer resource, the Pancreatic Cancer Collaborative Registry, which will include personal background information, medical, and family details, as well as dietary and environmental exposure history and a biospecimen registry from pancreatic cancer patients and their family members. One of the major goals of the PCCR 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 PCCR is committed to protecting each individual’s confidentiality/privacy online. Security issues are addressed using recommendations of the Healthcare Information and Management Systems Society (HIMSS) Privacy & 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 (HIPAA).
If you are interested in becoming a participating center or you are an individual/family interested in participating in this study and/or want more information regarding the PCCR please contact us.