Patient Registry Frequently Asked Questions

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Q. What is the Patient Registry?
A. The Patient Registry is a global online database created to look for patterns in treatments, side effect management and diagnostics that will lead to improved treatment options and outcomes for patients. By sharing information about their experiences, patients and their caregivers provide the data that is necessary for researchers to see these patterns. To capture information from patients, the registry includes short activities with questions about the patient, their medical history and their current health. The activities can be completed over multiple sessions and updated at any time. The information provided is completely secure; the user decides who sees the information, how it will be used and if they want to be contacted by researchers.

Q. Why should I join the Patient Registry community?
A. Many dedicated researchers are working hard to unlock important information about pancreatic cancer, but there is still much more that needs to be done – and we need your help. Whether you have been diagnosed with pancreatic cancer or have provided care for someone with pancreatic cancer, your contributions are meaningful. By joining our quickly growing community and sharing your experiences, you’re giving researchers access to crucial data that will help them make discoveries. Together, we will move pancreatic cancer research forward.

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Q. Who is eligible?
A. Anyone who has been diagnosed with pancreatic cancer, including those who are currently receiving treatment and those who have received treatment in the past, can fill out a profile for themselves. Anyone who provides or has provided care for someone with pancreatic cancer can fill out a profile for the person they provide or provided care for.

Q. Who will see my information?
A. The information you provide through the Patient Registry is kept completely secure and is under your control. Private Access’ unique security settings let you decide who sees your information, how it will be used and if you want to be contacted by researchers. Respecting your wishes is our priority.

Q. Does my doctor need to be involved or give permission?
A. No permission is needed from your doctor. You may want to ask members of your healthcare team for certain medical records, such as test results, to upload to your Patient Registry account.

Q. How do I use the Patient Registry?
A. To get started, set up your account and create a profile for the person for whom you are entering information. The registry includes activities with questions about the patient, their medical history and their current health. You can complete these activities over multiple sessions and update your information at any time. The information provided is completely secure; you decide who sees the information, how it will be used and if you want to be contacted by researchers. Researchers will dive into the information provided through the Patient Registry to help make discoveries.

Q. Where can I find more information if I still have questions?
A. A Patient Central Associate can answer any additional questions you may have and connect you with our Patient Registry Manager if you need assistance with setup or any other aspect of your account. Patient Central Associates are available Monday – Friday, 7 a.m. – 5 p.m PST.
Call toll-free: 877-272-6226
Email: patientcentral@pancan.org

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