Welcome to the
Vasculitis Patient-Powered Research Network

A Partnership of the Vasculitis Clinical Research Consortium and the Vasculitis Foundation

Our Mission

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 3,000 patient partners in 17 studies including 18 types of vasculitis.

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 a strong English proficiency.

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.

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 copy

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.

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

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.