Eosinophilic Granulomatosis with Polyangiitis (EGPA) Registry
An extension of the Vasculitis Patient-Powered Research Network.
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 VPPRN is an online, highly-functional and successful registry that conducts patient-centered clinical research. The VPPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis.
Being a Member
As a member of the VPPRN, you share your disease experience by providing self-reported data through our online surveys. This information is helping to improve the understanding of vasculitis and advance vasculitis research.
Our philosophy is simple: conduct high-quality research for patients WITH patients.
VPPRN Eosinophilic Granulomatosis with Polyangiitis (EGPA) Registry
We need more data!
We Need More Data For Research
Advancing vasculitis research is essential to improving care for patients with vasculitis. One of the challenges to conducting important research is participation by patients with Eosinophilic Granulomatosis with Polyangiitis (EGPA).
You are the key!
The Solution: Your Participation
You! By providing your health information for research, we get one step closer to advancing EGPA research. Building a large, enthusiastic research registry of patients with EGPA will result in more data to answer important research questions.
The VPPRN EGPA Registry is supported in part by GlaxoSmithKline.
Goal of the Study
The V-PPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis. 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.
What is Involved
Tell us about yourself
- Provide information about yourself, your diagnosis and treatment, and how vasculitis impacts your life.
- 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.
- 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.