IMPORTANT NOTICE: NPF REGISTRY TEMPORARILY UNDER CONSTRUCTION

Thanks for visiting.

As of February 26, 2019, the National Pancreas Foundation (NPF) has suspended enrollment and online access to the NPF Registry, including the NPF Patient Portal.

While we regret this inconvenience, we are eager to make improvements to the NPF Registry and provide a better user experience.

We sincerely appreciate your patience and support to help make the NPF Registry successful!

Please check back for updates at www.pancreasfoundation.org.


 

Frequently Asked Questions (FAQs)

 

About the Registry

What is the NPR?

The National Pancreas Foundation’s National Patient Registry for Pancreatic Diseases, also referred to as the NPR, is a national database used to track the health and treatments of people with pancreatic diseases. The NPR uses cutting-edge technology developed by Liaison Technologies, Inc.

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Who established the NPR?

The National Pancreas Foundation (NPF) pioneered the NPR. The NPF is a non-profit organization committed to advancing patient education, patient advocacy, treatment, and research of benign and malignant conditions of the pancreas. The NPF is the only foundation dedicated to people who are suffering from all forms of pancreatic disease.

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Why did NPF develop this registry?

The NPF recognized the need for a national patient registry and pioneered the NPR to support treatments and research dedicated to all pancreatic diseases. The NPR will serve as a valuable resource to better understand the natural history of pancreatic diseases, the effectiveness of current treatments, and the quality of life of patients affected by pancreatic conditions. It is the hopes of the NPF and the medical community that the NPR will lead to the improvement of treatments, quality of life, and quality of care for patients with pancreatic diseases.

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How does the NPR work?

The NPR collects information from healthcare providers and patients through a secure web-based portal. With the patient’s permission, the healthcare providers securely submit patient information from the medical records to the NPR. Unlike other patient registries, the NPR also provides patients with pancreatic diseases the opportunity to report their personal disease experiences through its online Patient Portal. It empowers participants to become more proactive in their health care to help improve the quality of their lives. It puts patients in the driver’s seat and allows them to be in control of what information is entered because it’s from their personal experience and perspective.

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Contact Information

Who should I contact if I have questions and/or problems related to the NPR?

If you have any questions or problems related to the National Patient Registry for Pancreatic Diseases (NPR), then please feel free to contact us. Our office is open Monday through Friday from 9:00 am to 5:00 pm EST, excluding holidays. You can contact us at the following information:

National Pancreas Foundation (NPF)

Phone: 1-866-726-2737

Fax: 301-681-9776

E-Mail: registry@pancreasfoundation.org

Website: www.pancreasfoundation.org

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