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

Frequently Asked Questions

Participation Questions

 

It builds on a strong foundation. The V-PPRN builds upon the Vasculitis Clinical Research Consortium's excellent reputation for conducting high-quality vasculitis research by increasing the role of patient engagement. The V-PPRN will also expand the data collected.

We are patient-powered. Patient-powered means patients participate as full partners in the work of the V-PPRN - from generating a research idea to summarizing results and all the steps in between.

 

Research we hope to conduct

The Network is prepared to conduct a wide range of clinical research from simple online surveys to large scale randomized clinical trials. As vasculitis visionaries, the V-PPRN has a large collection of research proposals all created in partnership with patient. The suggested research ideas are based on four important criteria:

 

  1. Importance to patients
    • Patients will select the top research ideas that that V-PPRN will conduct.
  2. Scientific value
    • Whether or not a study represents good science.
  3. Achievable within the V-PPRN
    • Does the V-PPRN have the resources and ability to complete this study?
  4. Funding 
    • Likelihood that a study will receive financial support.

 

The V-PPRN will be able to conduct:

  • Survey studies
    • Example: Social and economic impact of vasculitis
  • Comparative effectiveness research (CER)
    • Example: study effectiveness of methotrexate in Takayasu's
  • Clinical trials
    • Example:A trial of a new prescription drug with some patients assigned to receive the drug or to receive a placebo
    • Example: Intervention trial using an over-the-counter med/supplement 

You can join the V-PPRN if you identify as one of the following and have a strong English proficiency:

 

  • Patients with vasculitis
  • A parent of a child with vasculitis
  • A fulltime caregiver of someone with vasculitis

The V-PPRN is now open to international participants. The V-PPRN forms are currently provided in English only and require a strong English proficiency. By signing the V-PPRN consent form, you are acknowledging that all our forms and medical terminology used are in English.

 

For questions related to the V-PPRN, please contact the V-PPRN Manager.

Participation in the V-PPRN is completely voluntary. You may drop out of the Network at any time. Deciding not to participate in the Network does not affect your ability to receive care by any doctor or affect your ability to participate with the Vasculitis Foundation or the Vasculitis Clinical Research Consortium (VCRC) in other ways.

Technical Questions

To login to the MyV-PPRN patient portal, please click "Login" on the top right hand corner on any web page on the V-PPRN website. From here, you will enter your email address and the password you selected when you originally registered with the network.

If you have forgotten your password, please click on the "Forgot Password" link and you can reset your password by answering the password recovery question that you selected during registration.

If you have forgotten both your password and your password recovery answer then you will need to contact the V-PPRN Network Manager to reset your password by calling 1-888-772-8315 or emailing us.

You can change your email, phone number, and manage your message settings by clicking on the Profile link on any page of the MyV-PPRN patient portal website. This is located in the upper right corner of your MyV-PPRN portal web page.

You can change password by clicking on the Profile link in your MyV-PPRN patient portal and clicking on the Change Password tab. The Profile link is located in the upper right corner of your MyV-PPRN portal web page.

Participation in the V-PPRN is completely voluntary. You may drop out of the Network at any time. Deciding not to participate in the Network does not affect your ability to receive care by any doctor or affect your ability to participate with the Vasculitis Foundation or the Vasculitis Clinical Research Consortium (VCRC) in other ways.

My Health

Your current doctor will remain in charge of your care. If you have any questions or concerns about your illness, please contact your doctor.

Contact your doctor as soon as possible to discuss your symptoms.

*If this is a medical emergency, call 911 or emergency services in your area.

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Glossary of Terms

Definitions for commonly used terms found on our website >

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