Why did you decide to join the NPF Registry?
I volunteered to participate in the NPF Registry because I want to help fight for a cure for pancreatic disease. As a patient myself, I can tell you the daily struggles are real and can be very limiting. I want to create a better future for anyone suffering from pancreas problems.
What has the experience been like as a patient participating in this registry?
As a Patient Portal participant, I log into my online account to complete health surveys. In my first survey, I answered questions about how my pancreatic disorder was diagnosed by my doctors, what symptoms I have encountered, what I have encountered in my personal medical history, details about my family’s medical history, what treatments I have had, what my quality of life is like living with a pancreatic disease. After I see my doctors, I log back into the Patient Portal to give updates about my pancreatic disease, such as report any new symptoms I’ve been experiencing, any treatment changes ordered by my doctors, or any differences I’ve noticed in my quality of life. By completing surveys on a consistent basis, I’ve found it easier to keep up with.
Are the surveys difficult to complete?
No, not at all. I found the process to be easier if you had your medical history in front of you, especially if you have a long history of pancreatic disease.
Does it take a long time to complete the surveys?
Well, it depends. The first survey probably took me the longest to complete. If I had to guess, maybe about an hour, but I did split up the time. It’s nice to know that I can stop where I’m at in a survey and come back to where I left off to finish it later if I’m running short on time and can’t complete everything in one sitting. But follow-up surveys are easy and quick because you’re basically just giving an update, so maybe takes 15 or 20 minutes or sometimes shorter than that.
In your opinion, why do you think it’s important for others to sign up for the NPF Registry?
I want doctors and patients to have a better understanding of pancreatic diseases, especially pancreatic cancer. But to do so, data and information is needed to learn from. So, by contributing to the NPF Registry, I hope my small part helps to make a difference for the future of research and medicine.
