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.

Back to Top

 
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.

Back to Top

 
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.

Back to Top

 
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.

Back to Top

 

For Interested Patients

Why is the NPR considered as research?

This is a research study because we will be collecting your personal health information and recording this information in a computerized study database. Data entered in this database will be used in the future to research questions regarding the behavior of your condition and to evaluate the effectiveness of treatments used to treat patients with your condition.

Back to Top

 
Who is eligible to participate in the NPR?

Participation in the NPR is open to individuals living in the U.S. who have been diagnosed and/or treated for any pancreatic condition. Children who are 13 years of age or older AND younger than 18 years of age, or adults who cannot make their own medical decisions, must have their legal guardian/ legal representative/ parent sign on their behalf. However, children under the age of 13 years may NOT participate in the Patient Portal component of the NPR.

Back to Top

 
As a participating patient, what is involved?

Participation in the NPR is completely voluntary. To get involved with the NPR, patients may choose from one or both of the following options:

Clinical Database

To participate in the Clinical Database component of the NPR, patients must provide their consent with a participating healthcare provider. By providing your consent, you are giving your permission to the participating healthcare provider to report information from your medical records to the NPR. If interested, then please discuss with your treating physician and ask them to contact the NPF if they are not currently participating in the NPR.

Patient Portal

To participate in the Patient Portal, patients must complete the following steps:

1. Complete the online registration form (CLICK HERE to register)

2. Provide their online consent for participation to NPF

3. Obtain approval from NPF for online user access

4. Log into the online Patient Portal

Patient participants will be asked to answer questions in online surveys about their medical history, family history, diagnosis, symptoms, treatments, overall well-being. 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.

Back to Top

 
How will my information be used?

The information collected in this study and recorded in the NPR will be used to conduct future research regarding the clinical outcomes associated with various treatments of certain pancreatic conditions. This type of information is extremely helpful to researchers who are striving to improve the treatments and quality of life for patients with pancreatic diseases. The NPR will be used for future research studies. However, your personal identity will not be revealed in any publications, reports, or presentations that result from this research study.

Back to Top

 
Will my information be kept private?

The NPF is highly protective of patient privacy and confidentiality. Information about you collected for this research study will remain confidential, unless you give your permission to share it with others, or if we are required by law to release it.

You should know that certain organizations that may see, use, and share for research, quality purposes, and data analysis include:

    • The National Pancreas Foundation (Sponsor) and anyone working on the behalf of the Sponsor to conduct this study, such as the registry software vendor
    • The Executive Principal Investigator and associated research staff
    • Regulatory groups and/or agencies, which are in place to make sure the study is done correctly and safely and may include the following:
        • The Institutional Review Board (IRB) in association with the National Pancreas Foundation
        • The Office for Human Research Protection
        • Research monitors and/or reviewers related to the study
        • Data and safety monitoring boards

 
Information that is shared with other researchers and collaborators will be de-identified, which means all names and identifying associations will be removed so that it cannot be traced back to a specific individual. Thus, your personal identity will not be revealed in any publications, reports, or presentations that result from this research study.

Back to Top

 
How much time must be devoted to the Patient Portal?

The online surveys are simple and can be completed as you have time. The time it takes to complete a survey will vary from person to person based on their medical history. You can stop and return to a survey at any time. The surveys are saved as you go. On occasion, we may ask you to update some information in your online account.

Back to Top

 
Can a family member or caregiver help me with the online surveys?

Yes. With the participating patient’s permission, caregivers, such as parents, spouses, or legal representatives may access the Patient Portal to complete surveys on behalf of the patient. In these cases, the login information must be known in order to gain access to the patient’s account. This information must be shared by the participating patient and cannot be shared by NPF.

Back to Top

 
Can I cancel my participation if I change my mind?

Yes, you can stop your participation in this study at any time. If you decide to participate but later change your mind, then you are free to stop participation at any time.

Back to Top

 
Will it cost me anything to participate in the NPR?

No, you will not be charged any fees to participate in this research study.

Back to Top

 
Will I be paid if I take part in this research study?

No, you will not be paid to take part in this research study.

Back to Top

 

For Interested Healthcare Providers

As a participating healthcare provider, what is involved?

To become a participating site of the NPR, eligible healthcare providers must complete the Site Enrollment Process. Please click HERE for more information.

Back to Top

 
What costs are involved?

Participation in the NPR is free. However, any fees associated with IRB services, organizing/ coordinating staffing (e.g. regulatory maintenance, subject recruitment, subject informed consent, data entry, data monitoring, etc.), supplies, and equipment to support the site registry efforts are the responsibility of the participating site/ investigator.

Back to Top

 
Does the NPR require IRB approval?

Yes. As of January 2016, NPF has obtained IRB approval for the NPR’s research protocol through a Central IRB (Schulman IRB). Clinical sites are required to obtain local site IRB approval in order to participate in the NPR. Although NPF recommends for sites to seek approval through the NPR’s Central IRB, participating sites may elect to have their local IRB review and approve their participation in the NPR.

Back to Top

 
Can the NPR be used for quality assurance (QA) or quality improvement (QI) purposes?

Yes. To utilize the NPR for QA/QI purposes, clinical sites must enter into a Business Associate Agreement (BAA) with NPF. A BAA has been prepared by NPF and included in the Site Enrollment Package.

Back to Top

 
What is the expected amount of time required to participate in the NPR?

The time requirements for entering patient data will vary depending on your familiarity with the interface, your access to the data that you are entering, and the amount of data you enter. Once you are familiar with navigating the interface, and understand the field definitions, we estimate it should take approximately 30 to 60 minutes to enter a complete patient record.

Back to Top

 
I have a small department with limited staff. What amount of man hours will it take to be part of the NPR?

The time for the site application process will depend on several factors within your institution that cannot be estimated. You will need to have the Site Participation Agreement (including BAA) signed and returned, obtain IRB approval, and complete the mandatory registry training (at least one site member) before you can start entering patient data into the NPR. The Site Participation Agreement and IRB approval process will vary between institutions. The registry training will also vary between institutions, depending on staff involvement and/or questions.

Once you are using the registry, the time requirements for entering patient data will vary depending on your familiarity with the interface, your access to the data you are entering, and the amount of data you enter. We estimate that once you are familiar with navigating the interface and you understand the definitions for each field it should take approximately 30 to 60 minutes to enter a complete patient record.

Back to Top

 

Technical

How do I gain access to the NPR application?

To gain access to the NPR application, you must be approved by NPF registry staff. Your initial login information will be sent to your registered e-mail address.

Back to Top

 
When I sign up to participate in the Patient Portal, how long will it take for me to receive my initial login information from NPF?

We ask that you allow at least 24-48 hours for NPF to review and approve your registration information to receive your initial login information by e-mail.

Back to Top

 
What if I never received my initial login information from NPF?

If you provided an e-mail address when you applied for online access, then we will send a verification e-mail to that address. This e-mail will contain your username and password that you will need to enter into the web page to access your online account.

If you never received your initial login information to access the Patient Portal, then please contact us at registry@pancreasfoundation.org to request another verification e-mail.

Back to Top

 
How can I make sure I receive e-mails from NPF?

Increasingly, Internet Service Providers (ISP), e-mail services, and anti-virus programs are using filtering systems to try and keep Spam out of your e-mail inbox. Unfortunately, there are times when legitimate e-mail gets marked as Spam. In most cases, you are NOT notified (and neither is NPF) that an e-mail from “pancreasfoundation” was blocked and not delivered.

To make sure you receive e-mails from the National Pancreas Foundation (NPF), please ADD our e-mail address(es) and website address to your e-mail’s address book and trusted sender list (known as a “Whitelist”).

      • Sender E-mail Address(es):
        • noreply_pancreasfoundation@liaison.com
        • no_reply@pancreasfoundation.org
        • registry@pancreasfoundation.org
      • Domain(s):
        • pancreasfoundation.org
        • liaison.com

 
If you suspect you are still not receiving e-mails from “pancreasfoundation“, then contact your ISP or e-mail service for further assistance and request to receive e-mails from “pancreasfoundation“. You may provide NPF’s information as listed above.
 

UPDATE 7/25/2017: NPF is aware of an issue that is affecting e-mail delivery for AOL recipients, as well as some private domains. If you typically use an e-mail address “@aol.com” or at a private domain, then we suggest using an alternative e-mail address (e.g., Gmail, Yahoo, etc.) to help reduce e-mail delivery issues or interruptions.

Back to Top

 
What is Spam?

E-mail spam, also referred to as Junk e-mail, is unsolicited bulk messages sent through e-mail for commercial, fraudulent, or malicious purposes. Most often, computer viruses and phishing scams are caused by Spam.

Back to Top

 
What is a Whitelist?

It is a list of e-mail addresses and/or web domains that are considered as “safe” or acceptable to receive e-mail messages from and should not be marked as Spam.

Back to Top

 
NPF has already approved/ granted me access. Where do I log in to the Patient Portal?

To access your Patient Portal account, go to the Patient Portal login page by clicking HERE. You will be asked to enter your username and password.

If you are having trouble remembering your password, go to “What if I forget my password?” shown below or click on this LINK.

NOTE: The Patient Portal will only run in certain browsers. For more information, please see “What are the browser recommendations for the NPR?” or click on this LINK.

Back to Top

 
What if I forget my password?

      1. Click “Forgot your password?” on the NPR login webpage
      2. Enter your e-mail address (serves as your Username)
      3. Click “Get Password”
      4. Your temporary password will be sent to your e-mail address.
Back to Top

 

Back to Top

 

What are the browser recommendations for the NPR?

The National Pancreas Foundation Registry application uses Microsoft (MS) Silverlight and therefore is ONLY supported by the following desktop browsers:

      • For PC users:
        • Internet Explorer (IE) version 10 or higher
        • Mozilla Firefox running the Extended Support Release (ESR) version 52.X.X
      • For Mac users:
        • Mozilla Firefox running the Extended Support Release (ESR) version 52.X.X
        • Apple Safari (latest version for macOS)

 
Currently, all other browsers are NOT supported, including Google Chrome, Opera, or others.
 
If you are not using one of these browsers (or versions), please download a supported browser from one of the following sites:

 
If you are uncertain as to whether your browser is compatible with MS Silverlight, please review the following table at this link: https://www.microsoft.com/getsilverlight/Get-Started/Install/Default.aspx

In the event you need to download MS Silverlight, it may be accessed at: https://www.microsoft.com/getsilverlight/Get-Started/Install/Default.aspx

Back to Top

 
How can I open Internet Explorer from Microsoft Edge?

To learn how to open Internet Explorer from within Microsoft Edge, please refer to the downloadable instructions and follow the suggested steps. Click HERE to download.

Back to Top

 
What is Microsoft (MS) Silverlight?

MS Silverlight is a browser plug-in designed to provide graphic, animation, and video playback capabilities for online usage. MS Silverlight is required to support and operate the Patient Portal.

Back to Top

 
How do I download MS Silverlight?

If you are logging into the Patient Portal for the first time OR if your supported browser has been recently updated, then you may be prompted to install MS Silverlight by the registry application. To learn how to install MS Silverlight, please refer to the downloadable instructions and follow the suggested steps.

      • For PC users:
        • If you are using Internet Explorer, click HERE
        • If you are using Mozilla Firefox ESR, click HERE
      • For Mac users:
        • If you are using Mozilla Firefox ESR, click HERE
        • If you are using Apple Safari, click HERE
Back to Top

 
Why does my browser keep asking me to install Silverlight?

If you are asked repeatedly to install Silverlight when you log into the Patient Portal, this can happen for various reasons, such as the following:

      • Your browser is incompatible or not supported
      • Silverlight was not installed properly
      • The Silverlight plug-in is broken or there is a “bug”

 

Follow the suggested troubleshooting steps below to resolve the issue:

      • Check to make sure you are using a compatible browser
        • Click HERE for browser recommendations
      • Restart your browser
        • Sometimes restarting your browser can clear this issue.
            1. If you are logged into the Patient Portal, then please logout
            2. Close your browser
            3. Restart your browser
            4. Log back into the Patient Portal
      • Try using an alternate compatible browser
        • Click HERE for browser recommendations
      • Uninstall/ Reinstall Silverlight
          • To UNINSTALL Silverlight for WINDOWS users:
              • Windows 10:
                  1. QUIT all open browsers (including this window – You may want to print the following steps)
                  2. Click on the START menu
                  3. Select SETTINGS
                  4. Select APPS
                  5. Select APPS & FEATURES in the left sidebar
                  6. Find and select Microsoft Silverlight
                  7. Click on the [Uninstall] button
                  8. Follow the prompts
              • Windows 8:
                  1. QUIT all open browsers (including this window – You may want to print the following steps)
                  2. Open SETTINGS
                    • With your mouse, move the cursor/ pointer to the lower-right corner of the screen and click, then click SETTINGS
                  3. Select CONTROL PANEL
                  4. Select PROGRAMS & FEATURES
                  5. Underneath Programs, select Uninstall a program
                  6. Find and select Microsoft Silverlight
                  7. Click on the [Uninstall] button
                  8. Follow the prompts
              • Windows 7/ Vista:
                  1. QUIT all open browsers (including this window – You may want to print the following steps)
                  2. Open the START MENU
                  3. Select CONTROL PANEL
                  4. Select PROGRAMS & FEATURES
                  5. Find and select Microsoft Silverlight
                  6. Click on the [Uninstall] button
                  7. Follow the prompts
              • Windows XP:
                  1. QUIT all open browsers (including this window – You may want to print the following steps)
                  2. Open the START MENU
                  3. Select CONTROL PANEL
                  4. Select ADD or REMOVE PROGRAMS
                  5. Find and select Microsoft Silverlight
                  6. Click REMOVE
            • To UNINSTALL Silverlight for MAC users:
                  1. QUIT all open browsers (including this window – You may want to print the following steps)
                  2. Click on the Finder icon from the Dock at the bottom of the screen.
                  3. In the menu bar at the top of the screen, select Go, then select Computer.
                  4. Click the Macintosh HD icon.
                  5. Select Library
                  6. Select Internet Plug-Ins.
                  7. In the menu bar at top of screen, select Go, then select Applications.
                  8. Drag Silverlight plugin to the Trash.
                  9. Click the Trash icon and select Empty.
                  10. Once you have emptied your Trash, Microsoft Silverlight un-installation is complete.
            • To RE-INSTALL the latest version of Silverlight:
                  1. Open a supported browser
                    • Click HERE for browser recommendations
                  2. Sign in to the Patient Portal
                  3. Follow the prompts to download and install Silverlight to your computer
                    • For a step-by-step guide on how to install MS Silverlight, see “How do I download MS Silverlight?” or CLICK HERE
    Back to Top

     
    How can I learn more?

    User Guides are available for end users of the NPR application.

        • Clinical End Users will be provided end user guides and documentation by NPF during the site enrollment process.
        • Patient Portal End Users can choose to download the Patient Portal Quick Guide by clicking HERE

     
    Tutorial videos are available for the NPR application.

        • For Clinical End Users, please click HERE.
        • For Patient Portal End Users, please click HERE.
    Back to Top

     

    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

    Back to Top