Vasculitis Patient Powered Research Network (V-PPRN)

Details and Information

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Areas of Focus: Vasculitis including, Behçet’s disease, Central nervous system vasculitis, Cryoglobulinemic vasculitis, Eosinophilic granulomatosis with polyangiitis (Churg Strauss syndrome), Giant cell arteritis, Granulomatosis with polyangiitis (Wegener’s), Henoch-Schonlein purpura (IgA vasculitis), Microscopic polyangiitis, Polyarteritis nodosa, Takayasu’s arteritis, Urticarial vasculitis, other types of vasculitis

Population Characteristics: adults, caregivers, and parents of children with vasculitis

Organization: University of Pennsylvania

Principal Investigator: Peter Merkel, MD, MPH

About V-PPRN

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 Vasculitis Patient-Powered Research Network (V-PPRN) is the product of a more than 10-year joint effort among:

  1. Patients living with vasculitis
  2. Patient advocacy organizations
  3. University clinical investigators
  4. Data analysis experts
  5. Funding organizations

We are all dedicated to conducting clinical research in vasculitis aimed at addressing key scientific and clinical issues that are a high-priority to both patients and physicians.

The foundational cores of the V-PPRN were the Vasculitis Foundation, the umbrella vasculitis patient advocacy group in the United States; the Vasculitis Clinical Research Consortium, which includes the major centers for clinical investigation in vasculitis in the United States and Canada, as well as a significant international community of investigators; an established online group of patients with vasculitis dedicated to conducting meaningful research; the clinical community caring for patients with vasculitis; and experts in applying data standards in databases including electronic health records, disease-specific health data, and patient-reported outcomes (PROs).

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.

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 patients living with vasculitis.

The V-PPRN is poised to:

  • Drive new vasculitis clinical research studies
  • Engage patients in new ways:
    • Directly involve patients in the design and selection of research topics
    • Significantly increase the number of patients eligible to participate
    • Enroll a geographically diverse patient population
    • Broaden the disease spectrum by enrolling patients with many different types of vasculitis

The Network is ready to conduct a wide range of clinical research from simple online surveys to large scale randomized clinical trials. As vasculitis visionaries, the V-PPRN 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. Importance to patients: Patients will help select the top research ideas that that V-PPRN will pursue.
  2. Scientific Merit: Whether or not a study represents good science.
  3. Feasibility within the V-PPRN: The V-PPRN will decide if it has the clinical resources needed to perform the study.
  4. Fundability: Likelihood that a study will receive financial support.
  5. Relevance to Vasculitis: The degree to which a study is related vasculitis.

Follow the V-PPRN on Facebook and Twitter.

Last updated on August 30, 2016