VPPRN Patient-Powered Research
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
- You will also need regular access to the Internet and you are comfortable reading English.
If you meet the criteria above, fantastic! We need you!
Simply select the Join the Registry button to be taken to our online consent form. We’re excited to have you join the VPPRN community!
Already a VPPRN Member? Click the Login button below to login to your account.
Calling All Parents/Guardians and Children with Vasculitis!
The wait is over – the Vasculitis Patient-Powered Research Network’s Pediatric Vasculitis Registry (PedsVPPRN) is open and enrolling new patients!
Be part of the first pediatric research network for vasculitis.
Join the PedsVPPRN by clicking the Join the Registry button above
What We Collect
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.
SURVEYS
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 Network in Action
Together, patients and researchers are driving discovery and improving care for those living with vasculitis. See how the VPPRN turns collaboration and patient engagement into real progress for patient-centered research.
Who We Are
Our international research network of patients, scientists, clinicians, advocates, and family members works to improve healthcare and quality of life for patients with vasculitis through high-level clinical research.
Our Studies
Patient-partners help shape research priorities and studies. Learn about results of some studies that have been published or presented, and about new studies that are starting/recruiting.
Our Successes
Since its start in 2014, the VPPRN has enrolled over 5,000 patients from 100+ countries with 13 types of vasculitis into 25 studies.
Community dashboard
Every 6 months, we ask our VPPRN community to check-in and share updates on their health. Check it out and see how you compare with Network members.
Research Ready
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.
Patient-Powered
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
Stronger Together
New studies continue to launch, so get involved. The more participants we enlist, the faster we get results and the stronger the data.
Learn More About the VPPRN
See the frequently asked questions about research in vasculitis and 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