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:
- Asks a research question that is important to people affected by vasculitis (patient‐centered)
- VPPRN studies must be scientifically meaningful as well as relevant and important to people affected by vasculitis.
- Includes significant patient engagement in all aspects of the research
- “Patient engagement” refers to patients having meaningful participation throughout the research process, from topic selection to design, and conduct, and reporting of research.
- Utilizes VPPRN infrastructure and resources
- For a study to be considered a VPPRN study, it must use one or more VPPRN resources, including:
- Data from the VPPRN patient registry and/or another component of PCORnet
- Access to patients identified from the VPPRN patient registry
- For a study to be considered a VPPRN study, it must use one or more VPPRN resources, including:
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:
- Scientific merit
- Importance to patients
- Feasibility within the VPPRN
- Fundability
Open Studies
Learn about the open VPPRN studies and how you can participate.
VCRC-VPPRN EGPA Registry
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.
OPTIONS: Options and Preferences for Treatments Informing recOmmendatioNS
Goal: To better understand patients’ values and preferences about plasma exchange in ANCA associated vasculitis.
Study is now closed and under analysis.
VascSkin: Skin Vasculitis Quality of Life Survey
Goal: To better understand the impact of vasculitis-related skin involvement on patients’ quality of life.
Study is now closed and under analysis.
AAV Response Criteria Delphi
Goal: To measure which measures, tools, or outcomes are considered by patients to be important when assessing treatment response in AAV.
Study is now closed and under analysis.
Vasculitis Covid-19 Patient Project
Goal: To better understand coronavirus concerns of patients with vasculitis and track respiratory illnesses across the United States and Canada.
Study is closed and under analysis.
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.
Study is now closed and under analysis.
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.
Learn About Our Research Discoveries
Learn more about the research conducted by the VPPRN on our Research Discoveries page.
Questions?
Please note, our research team is here to make participation in this study easy for you. The study coordinator is available for you to contact if you have any questions or concerns. Contact the Study Team at [email protected] if you have questions about the study.
