The PCCR is a protected, Web-based database, which can only be accessed by authorized users. Key identifiers are encrypted in compliance with HIPAA regulations.
Pancreatic cancer is a disease characterized by a lack of symptoms at an early, curable stage. Currently, there are no screening tools available for pancreatic cancer; therefore, by the time it is detected, the disease has already spread to other organs, making for a poor prognosis.
With this diagnosis, patients often die before any clinical research can be done. Therefore, hope lies in the early diagnosis of pancreatic cancer, which lies in research of the patient's family and lifestyle information. Down the road, researchers hope this information will help identify the gene(s) responsible for pancreatic cancer and a possible means of early detection.
Based at the Eppley Institute, the mission of the PCCR is to unite centers with expertise in pancreatic cancer research. The registry is set to facilitate the uniform collection of critical information and biological samples to develop prevention and treatment strategies against this devastating disease.
There are currently 10 centers involved in the registry, including: UNMC, Creighton University, New York Medical College, Johns Hopkins Hospital, University of Washington, Evanston Northwestern University Healthcare, University of Pittsburgh, Mayo Clinic, University of Alabama Birmingham, and the National Cancer Institute.
Pancreatic cancer patients at these centers are presented with the option of participating in the study. To participate, patients simply fill out questionnaires and, in some cases, donate blood and/or tissue samples. The standard data collected from participants includes: personal background information, medical and family history, dietary habits, and environmental exposure. Participants are able to access their own data and can print their own family tree of cancer incidence.
Participating centers are currently gathering and putting data into the registry. Each center can only view and query its own data at this time. The next step is to build a data warehouse where the information can be pooled in one (on-line) location and searched for specific information (called data mining) by all participants. The NIH grant is funding this phase of the project.
Dr. Sherman and his group are currently working with physicians at UNMC and The Nebraska Medical Center to also develop similar registries for breast and lung cancers.
For more information on the PCCR go to http://pccr.unmc.edu or contact Marsha Ketcham, PCCR System Coordinator, at (402) 559-5286.