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

Blueprint for Innovative Research

The Challenges

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All types of vasculitis are rare diseases making it difficult to find enough patients for research studies.

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Patients are spread out geographically.

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It is hard to get health information from physicians to researchers.

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Getting the attention of funding agencies for research is hard.

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Sometimes patients and researchers don't talk enough about what is important to study.

The Solutions

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Enroll patients and collect data on-line to break down geographic barriers.

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Involve patients so that health information is easily shared with researchers.

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Work within PCORnet so the V-PPRN will have a much larger pool of patients and data and can collect electronic health records.

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Build a strong, vibrant Network and we will get funders' attention.

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Integrate patient-partners into all aspects of Network development.

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.

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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.

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Personal and health-related information. Health-related information and records you supply directly to the V-PPRN.

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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.

 

Hear about our blueprint for innovative research from our Co-Principal Investigator Dr. Peter A. Merkel

 

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Why are we collecting data from patients?

The V-PPRN seeks to conduct research in vasculitis in a new way by working directly with patients with vasculitis:

  • Patients will share their own clinical experiences and data
  • We will use the great potential research power of computerized health records
  • We will conduct research that matters to patients with vasculitis, including a range of studies from surveys to observational studies to clinical trials of new treatments. 

Patient-Powered Research

Patients power the V-PPRN. Patients work on the development and management of data collection, research agenda, and the sharing of research findings.

Our philosophy is simple: conduct high-quality research for patients WITH patients.

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Patients are involved in all aspects of research from developing research questions to writing study summaries.
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Patients are more than data points.

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Patients bring their insight to the table by participating in patient surveys on research interest and prioritization.

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