Pancreatic Tumor Registry

The AFFPC supports an established group of surgeons (official name and website coming soon) whose goal is to gather and share patient outcomes after surgery to improve patient-centered care for benign (non-cancerous) and malignant (cancerous) conditions of the pancreas. This data sharing effort is the first of its kind for pancreatic surgery and represents a critical exchange of information to improve the surgical treatment of pancreatic diseases.

This project gathers pancreatic surgeons from hospitals across the US and potentially the world into a data sharing network to link quality of life after surgery to patient characteristics like age, chronic medical conditions, and tumor size and location. This information will empower patients living with pancreatic cancer who must decide whether to undergo surgery without currently having any idea what the likely outcome will be for them.

How The Database Works

Using an iPad, patients enter their medical information at key points throughout their medical journey (view screenshots from iPad app).

Critical data is taken from the medical record by professionals associated with the the project, including information from the pathology reports and various imaging tests, such as CT scans (computed tomography). The data is then audited for completeness and accuracy by a Clinical Research Coordinator and stored centrally at the University of Nebraska Medical Center. The data storage facility is secure and data backups are continuously made to prevent accidental data loss.

The methodology used to gather and store data is accessible for further study.

Peace of Mind through Data Security

The registry is an encrypted, wireless data collection tool for patients that focuses on quality of life before and after treatment and was designed to test whether predictive models, such as the “five available methodologies,” are sufficiently accurate for routine clinical use and to inform decisions about surgery for individual patients. The registry is available at institutions with an Institutional Review Board and can be implemented at community centers. The project is allied with the Pancreatic Cancer Collaborative Registry.

Participating Centers:

Beth Israel Deaconess Medical Center, a teaching hospital of the Harvard Medical School

Hospital of Central Connecticut, affiliated with the University of Connecticut School of Medicine.

University of Pittsburgh Medical Center, a teaching hospital of the University of Pittsburgh School of Medicine.