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

V-PPRN Research Studies

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.

The V-PPRN is currently conducting the following studies in partnership with the Vasculitis Clinical Research Consortium. These studies seek to address research questions that are important to both patients and researchers.

VascWork Study (This Study Is No Longer Enrolling Patients)

Although much progress has been made towards finding better medical therapies to treat vasculitis, patients with vasculitis often must manage substantial disease and treatment burdens. Patients with systemic vasculitis may have high rates of work disability and significant loss of personal income from employment. This study will ask questions about:

  • Employment status (Do patients have to take a prolonged sick leave?)
  • Work productivity (How many patients have to adjust their work because of the physical demands of the job?)
  • Income (How many patients have a loss of income following the diagnosis of their disease?)

Learn more about this study >

ANCA Vasculitis Questionnaire (AAV-PRO©) (This Study Is No Longer Enrolling Patients)

We are developing and validating a questionnaire to assess quality of life in patients with ANCA-associated vasculitis (AAV). Patients with AAV have inflammation in the small blood vessels leading to involvement of a range of organs, for example kidneys, lungs and skin. Patients can suffer from ongoing disease activity or treatment side effects.

Quality of life can be measured by patient reported outcome measures (PROMs). This project is to develop a disease specific PROM for patients with AAV.

Learn more about this study >

Vasculitis Pregnancy Registry (V-PREG)

The purpose of this study is to learn about the experience of women with vasculitis who become pregnant. In particular, the study will consist of several on-line surveys to assess a) each woman's vasculitis severity and pregnancy-related experiences, and b) pregnancy outcomes.

Learn more about this study >

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