Vasculitis Patient-Powered Research Network
A partnership of the Vasculitis Clinical Research Consortium and the Vasculitis Foundation

What's Involved

When you enroll in the V-PPRN, you can expect us to:

We will work to transform clinical research in vasculitis by collecting patient data from a large number of patients with many forms of vasculitis. We seek to learn more about vasculitis, discover better ways to treat these diseases, and improve patients' lives.

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The V-PPRN will directly engage:

  • Patients, parents or legal guardians, and caregivers or family members of patients
  • Investigators
  • Health systems
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The V-PPRN will respect your privacy by:

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The V-PPRN will keep you informed by:

  • Providing V-PPRN updates and information about new research studies in which you may be interested
  • Giving feedback and sharing what we learn about vasculitis
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The V-PPRN will provide engagement opportunities, including:

  • Co-learning and patient collaboration in clinical research. You will have the opportunity to engage with the Network as well as the Vasculitis Foundation.
  • Opportunities for you to share what vasculitis research questions are most important/relevant to you.
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The V-PPRN works with patients.

Patients are research partners at every level of research from development of a project, to summarizing the results, and to sharing the study findings.

You will be asked to complete the following steps:

Participation in the V-PPRN begins with enrollment in the Vasculitis Clinical Research Consortium (VCRC) Patient Contact Registry which connects patients with opportunities to participate in clinical research trials and experts in vasculitis.

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Sign Up.

  • Complete your V-PPRN Profile which includes a series of basic questions about yourself, your disease, and how you prefer to be contacted
  • Create your password for your V-PPRN account that you will use whenever you log back into the V-PPRN
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Tell us about yourself.

  • Complete an online survey about yourself and how vasculitis impacts your everyday life
  • The surveys can be done all at once or in short time blocks on your computer, tablet, or smart phone—whatever works best for you
  • The information you provide to us will be kept confidential and secure
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Agree to let us contact you.

  • We want to make you aware of the most recent discoveries and opportunities in vasculitis research.
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Check-in regularly.

  • We ask that you update your contact information regularly to ensure that we have the most up-to-date information
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Participate at YOUR level of comfort.

  • We want you to participate in the V-PPRN for many years so we know how your health changes over time
  • Participation in the V-PPRN is completely voluntary and you can withdraw at any time

Join the V-PPRN and become a vasculitis visionary! Get Started

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Who Can Join the V-PPRN?

You can join the V-PPRN if you are one of the following:

  • You are a patient with vasculitis
  • You are the parent of a child with vasculitis
  • You are the caregiver of an adult patient with vasculitis

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

Which types of vasculitis will the V-PPRN study?

Join the V-PPRN and become a vasculitis visionary! Get Started