Overview

What is the VPPRN?

The Vasculitis Patient-Powered Research Network (VPPRN) is an online, global patient registry with 5,000+ members spanning 90 countries working towards a common goal: to improve the quality of life for all patients across all types of vasculitis and ages.  

As the research arm of the Vasculitis Foundation, the VPPRN conducts patient-centered clinical research – in other words, we strive to find answers to the questions most important to patients living with vasculitis.

Why should I join the VPPRN?

Vasculitis is a rare disease, and the cause of vasculitis is not fully understood.  Even though vasculitis affects people of all ages and races, more research is needed to further our understanding of this disease.  Research is vital to disease understanding, better treatment options, earlier diagnosing, and improving the quality of life for patients.

What’s unique about the VPPRN are the patients themselves – you are the expert of your disease, and you can contribute toward a better picture of the vasculitis disease experience.

What research is being done and what results are available?

There are two types of research studies being done in the VPPRN: longitudinal studies and sub-studies.

• • • • VPPRN longitudinal studies – The VPPRN collects longitudinal data, or data over time, to understand how your disease activity has impacted your life. This is important for research as it helps build a better picture of the vasculitis disease experience.
      • VPPRN sub-studies – Single, standalone studies. Every VPPRN member who meets the criteria for such studies will be invited to join.

Research Eligibility

Who makes up the VPPRN?

The VPPRN is made up of patients, researchers, clinicians, advocates, and family members all working together to improve the lives of patients with vasculitis through innovative online clinical research

Who can join the VPPRN?

You can join from anywhere in the world if you are one of the following:

• • • • Patient with any type of vasculitis
      • Parent of a child with vasculitis
      • Caregiver of an adult patient with vasculitis

You will also need regular access to the internet and a strong English proficiency.

My loved one is already a member of the VPPRN.  Can I join the VPPRN as well?

We strongly encourage one account per person with vasculitis for research integrity. 

I am a part of the Vasculitis Foundation.  Does that mean I am also a member of the VPPRN?

Being a member of the Vasculitis Foundation does NOT mean you are also a member of the VPPRN.  The VPPRN is a patient research registry and consent is required to join.

Unsure if you are a member of the VPPRN? Not a problem!  We can help.

Please email support@vpprn.org and we can assist you with verifying this information.

I live outside of the United States.  Am I allowed to join?

Yes, as long as you have regular access to the internet and am proficient in English.  The VPPRN is comprised of 5,000+ patients spanning more than 90+ countries.

Being a Research Participant

What does being a part of the VPPRN involve?

The VPPRN is free to join.

The VPPRN is completely online, and you can participate in research at the convenience of your home!

You do need to inform your health care providers prior to joining the VPPRN. This is not necessary as you do not need to change your care providers.

What information will the VPPRN ask me to provide?

At the time of joining, you will answer questions about your demographic profile, symptoms, disease activity, and medication.

Then, every January and July, we will ask you to update us on your health. We strongly encourage you to complete these even if nothing has changed since your last update. As a longitudinal study, we aim to understand your long-term journey with vasculitis and how it progresses over time.

How is my data protected?

The VPPRN is committed to protecting patient data and privacy and is fully compliant with Health Insurance Portability and Accountability Act (HIPAA) and General Data Protection Regulation (GDPR) guidelines.

As outlined in our VPPRN Privacy Pledge, the VPPRN comes with these important privacy assurances:

• • • • Personal data and health information are stored on a secure computer server.
      • Personal data will NEVER be sold, rented, or leased.
      • No outside advertising will be conducted within the VPPRN.
      • You may choose your level of participation and amount and type of information shared.
      • All information collected about you as part of the VPPRN will be kept confidential to the extent permitted by law.
      • All collected data is transmitted, stored, and processed in a secure environment.

How do I participate in a VPPRN study?

By simply joining the VPPRN, you will be participating in the longitudinal study to collect data over time.  At registration, you will answer questions about symptoms, disease activity, and medication.  Then, every January and July, we will ask you to update us on your health.

Occasionally, there are additional VPPRN sub-studies that you might be eligible for.  Every VPPRN member who meets the criteria for such studies are invited to join.

Does the VPPRN provide medical advice?

When it comes to your health, we want you to receive the best information and care.  The VPPRN does not answer individual health questions as we are not providing direct care services.  The information available through the VPPRN is provided “as is” for general information purposes only and is not intended to replace the medical advice of your physicians.  Your direct care provider is the best source for your individual health related question.  Please consult your physician in all matters relating to your health, and particularly with respect to any symptoms that may require diagnosis or medical attention.

Contact

Who should I contact at the VPPRN for more information?

If you need any assistance at any time or if you have any questions, please contact the VPPRN Network Manager at support@vpprn.org or by phone at (215) 662-3866.