Vasculitis Patient-Powered Research Network (V-PPRN)

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

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Who We Are

We are a team of patients with vasculitis, caregivers, researchers, data specialists, and providers on a daily mission to share and learn from one another with a vision for the future in clinical vasculitis research.

 

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Mission

The V-PPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis.

The goal of the V-PPRN research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.

 

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Who Can Join the V-PPRN?

You can join the V-PPRN 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.* 

 

 

 

 

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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.