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Open Studies

Have you joined the VPPRN?

The VPPRN promotes the advancement of research that provides reliable, useful, and meaningful information to patients with vasculitis and their clinicians.

We maintain an online research registry of patients with all forms of vasculitis providing clinical data about their condition. The type of information collected through the VPPRN portal includes:

    • data elements relevant to diagnosis
    • disease extent
    • medications
    • demographics
    • healthcare team
    • patient‐reported outcomes

VPPRN Study Characteristics

To uphold a standard of scientific excellence that aligns with our commitment to patient‐centered research, a VPPRN study must possess ALL the following characteristics:

    VPPRN studies must be scientifically meaningful as well as relevant and important to people affected by vasculitis.
    “Patient engagement” refers to patients having meaningful participation throughout the research process, from topic selection to design, and conduct, and reporting of research.
    For a study to be considered a VPPRN study, it must use one or more VPPRN resources, including:
    • Data from the VPPRN patient registry
    • Access to patients identified from the VPPRN patient registry

The VPPRN has successfully performed a wide range of clinical research and is poised to conduct research studies from simple online surveys to large-scale randomized clinical trials. As vasculitis visionaries, the VPPRN has a large collection of research proposals all generated in collaboration with patient-partners. The proposed research ideas are based on four essential criteria:

  1. Scientific merit
  2. Importance to patients
  3. Feasibility within the VPPRN
  4. Fundability

VPPRN Open Studies

Learn about the open VPPRN studies and how you can participate.


Goal: To conduct clinical research and clinical trials to learn more about EGPA with the goal of improving management and treatment of this complex disease.

Who Can Participate? Any patient with a diagnosis of EGPA.

Vasculitis Pregnancy Registry (VPREG)

Goal: The primary objective of this study is to understand pregnancy characteristics and outcomes among women with vasculitis.

Who Can Participate? Patients who are currently pregnant and over 18 years of age.

Closed Studies In Analysis

These VPPRN studies are currently closed for enrollment. The data from these studies is currently under analysis.

Sleep-Vasc: Quality of Sleep in Vasculitis

Goal: Through this study, we hope to learn more about the quality of sleep of patients living with vasculitis.

Study is now closed and under analysis.

VascStrength (VascStrong)

Goal: To describe the prevalence of common health conditions associated with frailty in patients living with vasculitis and describe its impact on health-related quality of life and clinical outcomes.

Study is now closed and under analysis.

Closed Studies

These VPPRN studies are closed for enrollment.  Please refer to our Research Discoveries page to view the study findings and publications for these research studies.

VascSkin: Skin Vasculitis Quality of Life Survey

Goal: To better understand the impact of vasculitis-related skin involvement on patients’ quality of life.

OPTIONS: Options and Preferences for Treatments Informing recOmmendatioNS

Goal: To better understand patients’ values and preferences about plasma exchange in ANCA associated vasculitis.

AAV Response Criteria Delphi

Goal: To better understand coronavirus concerns of patients with vasculitis and track respiratory illnesses across the United States and Canada.

Vasculitis Diagnostic Validation Study

Goal: To explore novel methods to provide a feasible approach to diagnostic confirmation for use in future patient-reported registries like the VPPRN.

Learn About Our Research Discoveries

Learn more about the research conducted by the VPPRN on our Research Discoveries page.


Our research team is here to make participation in research studies easy for you. The study coordinator is available for you to contact if you have any questions or concerns. Contact the Christine Yeung, the VPPRN Network Manager, at [email protected] if you have questions about the study.

Are you a member of the VPPRN?

Our vision is to improve the health of vasculitis patients by developing early-diagnosis methods, discovering more effective treatments, and finding cures. We are inviting thousands of patients with vasculitis, and caregivers, to come together to learn more about symptoms, share experiences, and to become a part of a research network to improve lives.

It is a whole new way of finding answers for the questions most important to YOU and other patients living with vasculitis.