The NPF National Patient Registry
The National Pancreas Foundation (NPF) is proud to announce the upcoming launch of the first ever National Patient Registry for Pancreatic Diseases (NPR). 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.
Purpose/ Mission/ Scope
The primary goal of the NPR is to capture data reported by healthcare providers and patients to better understand pancreatic diseases, the effectiveness of current treatments, and the quality of life for patients affected by pancreatic conditions. The NPR collects information from healthcare providers and patients through a secure web-based portal.
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 by completing surveys about their medical history, family history, diagnosis, symptoms, treatments, overall well-being. 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 Patient Portal enables participants to learn more about how their pancreatic disease affects them, as well as their family members. Participants may work at their own pace and enter as much information as they like. Participants can also log onto the Patient Portal at any time day or night, as often as they choose, and from anywhere with internet access.
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.
Patient Portal Participation
To participate in the Patient Portal, patients will need to register online on the NPF website, provide their consent for participation to NPF, and will be granted online access by NPR staff.
If you are interested in participating in the online Patient Portal, CLICK HERE for more information.
Clinical Site Participation
If you are a healthcare provider interested in contributing to the NPR, please click HERE for more information.
Frequently Asked Questions
Click HERE to view Frequently Asked Questions (FAQs) – The following areas will be addressed:
- About the Registry (NPR)
- What is the NPR?
- Who established the NPF?
- Why did NPF develop this registry?
- How does the NPF work?
- For Interested Healthcare Providers
- As a participating healthcare provider, what is involved?
- What costs are involved?
- Does the NPR require IRB approval?
- Can the NPR be used for quality assurance (QA) or quality improvement (QI) purposes?
- What is the expected amount of time required to participate in the NPR?
- I have a small department with limited staff. What amount of man hours will it take to be a part of the NPR?
- For Interested Patients
- Why is the NPR considered as research?
- Who is eligble to participate in the NPR?
- What is involved?
- Clinical Database
- Patient Portal
- How will my information be used?
- Will my information be kept private?
- How much time must be devoted to the Patient Portal?
- Can a family member or caregiver help me with the online surveys?
- Can I cancel my participation if I change my mind?
- Will it cost me anything to participate in the NPR?
- Will I be paid if I take part in this research study?
- Technical Requirements
- How do I gain access to the NPR application?
- When I sign up to participate in the Patient Portal, how long will it take for me to receive my initial login from NPF?
- What if I forget my password?
- Browser compatibility recommendations
- Tutorial videos
- NPF Contact Information
The NPR is funded through the generous support of corporations, foundations, and individuals who have been impacted by pancreatic diseases who recognize that the creation of a registry is profoundly important to improving the lives of those affected by these conditions. If you would like to contribute to this important program, please click HERE to donate.
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)