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.

The V-PPRN will directly engage:

Patients, parents or legal guardians, and caregivers or family members of patients
Investigators
Health systems

The V-PPRN will respect your privacy by:

Assuring that all data is secure
We allow you to choose what data you share

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

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.

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.

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

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

Agree to let us contact you.

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

Check-in regularly.

We ask that you update your contact information regularly to ensure that we have the most up-to-date information

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