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.

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Goal of the 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.

Who Can Participate?

Any patient with a diagnosis of EGPA.

Participation Options

  • 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.

 

Who We Are

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.

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.

Questions and Study Contact

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.

 

The VCRC-VPPRN EGPA Registry Is Supported in Part by GlaxoSmithKline