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.
As a patient-centered research registry, the VPPRN focuses on research that matters to you. One of the biggest concerns we've heard from patients is understanding how well and how quickly a treatment will work.
That's why we're excited to launch a new study in partnership with researchers at the University of Alabama at Birmingham.
Learn more about this study >
What did your journey to a diagnosis of vasculitis look like? How long did it take? The V-PPRN research team wants to know about the factors that impacted your journey to a diagnosis of vasculitis.
All forms of vasculitis are rare, and many of the presenting symptoms of vasculitis are similar to those of other, more common diseases. As a result, patients are often misdiagnosed and treated for other conditions before establishing the correct diagnosis. The rarity of vasculitis coupled with the wide range of potential symptoms likely contributes to delays in diagnosis. Early diagnosis can help to minimize the physical and mental impact vasculitis has on patients and potentially reduce costs of healthcare utilization.
Little is known about the typical duration of delay for each type of vasculitis and factors that contribute to the delay in diagnosis. It is also unclear whether delays in diagnoses vary based on the type of vasculitis, the initial presenting symptoms, or the geographical locality. This study aims to gain insight into the factors that inhibit a timely diagnosis of vasculitis.
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.
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:
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.
