VPPRN Patient-Powered Research
VCRC-VPPRN EGPA Registry
The VCRC-VPPRN EGPA Registry is an extension of the Vasculitis Patient-Powered Research Network (VPPRN) and is hosted online in the VPPRN secure patient portal.
The Vasculitis Clinical Research Consortium (VCRC) and the Vasculitis Patient-Powered Research Network (VPPRN) are an integrated group of academic medical centers, patient support organizations, online research registry, and clinical research resources dedicated to conducting clinical research in vasculitis.
The Challenge – We need more data for research!
One of the challenges to conducting important research is participation by patients with Eosinophilic Granulomatosis with Polyangiitis (EGPA).
The Solution – Your participation is necessary!
You can impact EGPA research by joining the EGPA registry online today.
About the VCRC-VPPRN EGPA Study
To conduct clinical research and clinical trials to learn more about EGPA with the goal of improving management and treatment of this complex disease.
Any patient with a diagnosis of EGPA.
Participation Options:
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- VPPRN: Online registry representing patients and caregivers who have agreed to receive information and participate in research.
- VCRC: Longitudinal study, representing patients who received care at one of the eight participating VCRC clinical centers.
What Is Involved for the Online Registry?
The first step is to consent to join the EGPA Registry through the Vasculitis Patient-Powered Research Network. You will then be asked to complete your profile and disease specific surveys on our secure patient portal.
Tell Us about Yourself
Provide information about yourself, your diagnosis and treatment, and how vasculitis impacts your life.
Check-in
We will need you to periodically update your information so that we have your latest data and contact information.
Agree to Let Us Contact You
We plan to give you opportunities to participate in studies that may lead to improved care and outcomes for patients with vasculitis.
Stick Around
Participation is completely voluntary and you may choose to withdraw at any time. We hope that you choose to stay an active participant in the research to help improve care for people with vasculitis.
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 Christine Yeung from the Study Team at christine.yeung@pennmedicine.upenn.edu with questions about this study.
The VCRC-VPPRN EGPA Registry is supported, in part, by GlaxoSmithKline.
Not a Member of the VPPRN?
If you aren’t a member of the Vasculitis Patient-Powered Research Network (VPPRN) and the VCRC-VPPRN EGPA Registry, we invite you to join today!
We want to understand your individual patient experience. We will learn about individual patient experiences by collecting data you provide.
Questions? Please contact Christine Yeung, the VPPRN Network Manager at christine.yeung@pennmedicine.upenn.edu.
Already a Member of the VPPRN?
Congratulations, you are already powering EGPA research!
As a member of the VPPRN, you have shared your disease experience by providing self-reported data through our online surveys. The collection of EGPA specific surveys is also referred to as the “EGPA Registry”.
We ask that you continue to check-in to your secure VPPRN portal and continue this important work but now with questions that will capture a more in-depth picture of your disease experience.
Interested in Other Research Opportunities?
We are a team of patients with EGPA and other forms of 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.
The goal of the VPPRN 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.
Learn about current opportunities to participate in research.