Introducing the National Pancreas Foundation’s National Patient Registry for Pancreatic Diseases
The National Pancreas Foundation (NPF) is proud to announce the launch of the first ever National Patient Registry (NPR) for Pancreatic Diseases as of September 26, 2017. The NPR is a national research study database used to track the health and treatments of people with pancreatic diseases. The NPR uses cutting-edge technology developed by Liaison Technologies, Inc.
The NPF pioneered this registry to support treatments and research dedicated to all pancreatic conditions. 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.
The primary goal of the NPR is to capture data reported by healthcare providers and patients to better understand pancreatic disorders, the effectiveness of current treatments, and the quality of life for patients affected by pancreatic conditions.
Clinicians may partner with the NPF to contribute to the registry by providing health data to the NPR with each patient’s permission. This effort enables the partnering medical facilities and researchers from across the country to share de-identified aggregate data that will be used to support evidence-based medicine.
Unlike other patient registries, the NPR also provides patient-participants 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 the patient 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.
The NPR will be paramount to the development and acceleration of research dedicated to fighting pancreatic diseases, as well as finding the most effective therapies to help patients combat these disorders.
Participation is open to any individual who has been diagnosed and/or treated for any pancreatic condition. By contributing to the NPR, participants can join the fight against pancreatic diseases.