Welcome to the
Vasculitis Patient-Powered Research Network
A Partnership of the Vasculitis Clinical Research Consortium and the Vasculitis Foundation
Who Can Join the VPPRN?
You can join the VPPRN 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
If you meet the criteria above, fantastic! We need you! Simply select the Join Our Registry button to be taken to our online consent form. We’ll be glad to have you onboard.
What We Are Collecting
We want to understand your individual patient experience. We will learn about individual patient experiences by collecting data you provide. We’ve made it easy for you to contribute this data to make vasculitis research happen now.
We will ask you basic questions about you and your health. We will ask you to update this information regularly. You can update your information on your computer or smart phone.
Personal and health-related information
We will collect health-related information and records you supply directly to the VPPRN.
Electronic Health Records
In the future, if you give us permission, your medical records may be requested directly from your health care provider or uploaded by you.
Our highly functional and successful infrastructure facilitates patient-centered clinical research, including fully self-contained projects within our large and data-rich patient portal to cross-collaborative studies that leverage our extensive expertise in the study of vasculitis and our engaged and research-sophisticated patient partners.
The VPPRN is guided by our patient-partners who identify research needs for study development and prioritize research requests from the vasculitis community. Research suggestions from patient-partners led to several studies now completed, including the “Journey to Diagnosis” Study which helped to gain insights into factors that delay a timely diagnosis of vasculitis
COVID-19 research has dominated our current efforts as we survey patient-partners about how the novel virus is affecting their lives. New studies continue to launch, so get involved. The more participants we enlist, the faster we get results and the stronger the data.
Want to learn more about the VPPRN?
Click the video below from the 2023 International Vasculitis Symposium to learn more about the Vasculitis Patient-Powered Research Network – who we are, what we do, and how you can play an active role in vasculitis research.
Featured in this video are:
- Dr. Peter A. Merkel, MD, MPH, Co-Principal Investigator of the VPPRN
- Dr. Jenn Gordon, PhD, Co-Principal Investigator of the VPPRN and Lead Patient Research Partner