Welcome
We are glad you are here. As a patient-founded organization, we know your journey has not been easy. Rest assured; you are no longer alone. By joining the NPF Registry, you will become part of an active patient-focused community that is here to help each other find answers and discover ways that will change lives for the good.
What is the NPF patient registry?
NPF’s patient registry is a cloud-based health information management tool for patients affected by pancreas disease. It is the first patient registry impacting all forms of pancreatic disease, including pancreatic cancer, chronic and acute pancreatitis, pediatric pancreatitis, and Familial Chylomicronemia Syndrome (FCS).
As a patient-centric platform, the NPF Patient Registry will enable greater collaboration amongst researchers, our foundation, and the patient community by leveraging patient-curated data to accelerate progress towards improving the quality of care and quality of life for patients with pancreatic disease.
Who is this for?
Anyone who has been diagnosed and/or treated for any pancreatic condition, such as:
- Acute Pancreatitis
- Recurrent Acute Pancreatitis
- Pediatric Pancreatitis
- Chronic Pancreatitis
- Pancreatic Cysts
- Pancreatic Insufficiency
- Pancreatic Cancer
- Familial Chylomicronemia Syndrome
Registry Features
Imagine the ease, and amount of precious time saved by having all your health information in one convenient, private, and secure cloud-based platform.
- Easily retrieve your health information in a secure, central location
- Link to participating U.S. based patient portals and add health records from
multiple providers to your profile - Create patient-directed printable health cards to easily share your medical
information with healthcare providers, family and caregivers - Synch data from your fitness and health tracking devices
- View and track your real-time health data over time
- Integrates your information from most consumer DNA sequencing
providers (e.g., 23andme) - Consolidates your lab results & medication information
- Streamline and organize your personal and family health information
- Keep updated on clinical trials
- Participate in surveys to help researchers uncover insights
Coming Soon!
- Educational resources provided by NPF
- Interactive patient-centric surveys focused on nutrition & quality of life
Join in 3 Simple Steps
- Set Up Your Profile
We will ask a few questions to get you started. Registration is quick and
easy. - Connect Your Records
Upload your patient medical records so they are always on hand.
Choose from a list of providers in your area or easily search for your
provider by name or zip code and connect your records directly to your
account. - Explore Your Data and Enjoy!
View and manage data in your dashboard.
Help NPF Make a Difference
By joining the NPF Patient Registry, you are taking the first critical step towards helping the medical community better understand pancreas disease. The NPF Patient Registry will mobilize technology to allow our institutional partners to analyze, visualize, and query the data.
As a true leadership initiative, the NPF Patient Registry will lead to a deeper understanding of novel therapies, predictive biomarkers, and significantly improved patient outcomes.
NPF works with world-leading medical researchers and institutions to provide patient-supplied data to support breakthroughs and discoveries.
Privacy And Security
All information provided will be protected in accordance with Seqster’s privacy policy and internal security policy.
News
Contact Information
Please feel free to contact us with any questions about the NPF Registry.
Office Hours: Monday – Friday, 9:00 am – 5:00pm, excluding holidays
Phone: 1-866-726-2737
Email: registry@pancreasfoundation.org
Website: pancreasfoundation.org
About the National Pancreas Foundation
The National Pancreas Foundation is a non-profit organization committed to
improving the quality of life of all those afflicted by pancreatic diseases. We are changing the face of pancreatic disease through our National Chapters, Centers of Excellence, and a National Patient Registry, which provide aid to those in need, support to advance research, and advocate to improve
treatment options.
