What is the Pancreas Community Registry?
The OHSU Pancreas Community Registry (OHSUPancreas) is a private library of data collected from individuals with an interest in pancreatic diseases including pancreatic cancer and pancreatitis.
The purpose of this registry is to:
- Identify individuals who may be eligible to participate in new research studies
- Harness the passion of the community to make advances in pancreatic disease research
- Communicate about pancreatic disease community education opportunities (e.g., BCCPC's patient-education conference or provider CME conference, each held about every 2-3 years)
Who can join?
Anyone with an interest in pancreatic disease can join this registry.
How can I join the OHSUPancreas
Visit ohsu.edu/ohsupancreas to fill out the online form. You must provide an email address and agree to be contacted periodically with additional optional surveys, information about community events, or information about new research projects. You may choose to withdraw from the OHSUPancreas at any time and for any reason.
How will OHSUPancreas benefit me?
Registry participants can feel good knowing they are contributing to a lifetime of research opportunities that seek to shed light on the causes of pancreatic disease, and will subsequently be used to develop new treatments and ultimately discover a cure for these diseases.
*Please note that participants in this Registry will not receive medical information or advice from BCCPC.
How will my information be protected?
Federal privacy protections require that all personal health information be kept completely confidential. We honor this obligation by storing electronic information in a safe place. In some cases, information is used for research purposes. However, we will not share your personal health information without your written permission.