Results Summary

PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.

Patient-Powered Research Networks (PPRNs) are networks operated and governed by patients, families, caregivers, and community members in close collaboration with clinical researchers, with the goal of shaping and conducting research to better serve their communities and improve their health outcomes. Several PPRNs, including the Vasculitis Patient-Powered Research Network (VPPRN), participated as Partner Networks in PCORnet.

PCORI funded VPPRN’s participation in PCORnet from 2015 to 2019. This report outlines VPPRN’s achievements in building its research infrastructure capacity to

  1. Create ways to involve patients, families, and caregivers in decision making about the network
  2. Create a way to collect and share data reported by patients for research
  3. Involve patients, caregivers, families, and communities in the research process, including recruiting people to participate in research studies
  4. Lead or join in research studies that focus on the community’s priorities

Network at a glance

The VPPRN is a PPRN made up of people affected by vasculitis, a family of almost 20 rare diseases. Vasculitis is inflammation of the blood vessels that occurs when the body’s immune system attacks blood vessels by mistake, damaging organs and tissues. Many types of vasculitis exist, and symptoms and severity vary.

Led by the University of Pennsylvania, the network is a partnership between the Vasculitis Clinical Research Consortium, which is a group of medical centers, patient organizations, and researchers, and the Vasculitis Foundation, a patient advocacy organization. As of March 2019, the network included 2,760 patient partners. These patient partners are people diagnosed with vasculitis, parents of children with vasculitis, and caregivers of adult patients. Recruiting patients with rare diseases for research is difficult, and the goal of the VPPRN was to collect patient-reported information for patient-centered research studies.

Title Vasculitis Patient-Powered Research Network (VPPRN)
Network design Patient-Powered Research Network (PPRN)
Lead partner The University of Pennsylvania
Other partners Vasculitis Clinical Research Consortium
Vasculitis Foundation
Participants 2,760 patient partners
Area(s) of focus Vasculitis

How does the network operate?

The VPPRN Steering Committee, made up of investigators, patients, and research staff, makes decisions about how the network operates. Three working groups also contribute. One working group plans research projects; another focuses on information supplied by patients for use in clinical studies; and a third encourages patient recruitment, involvement, and communications.

People with vasculitis provide information for use in research studies. When they join the network, they submit information about their health through a secure online portal. Patients gave permission to the network to share information. Information collected when patients join the network includes

  • Basic information such as age, sex, job, and marital status
  • Medical history
  • Diagnosis
  • Extent of disease
  • Medications

The VPPRN also collects information from pregnant women with vasculitis. This information helps researchers understand how vasculitis affects the health of pregnant women and their babies.

Patients participating in the network also complete surveys that collect information for specific studies. For example, participants in a study on diagnosis completed surveys about how long it took them to be diagnosed with vasculitis and how the time from first symptoms to diagnosis affected them.

The VPPRN also collaborated with other PPRNs, research networks, universities, and the pharmaceutical industry on studies that used network data. The VPPRN scored research proposals based on the importance of the research to patients and its scientific value.

How did the network involve patients and other partners?

Patient partners participate in every level of VPPRN leadership. They work on strategic planning, and developed, reviewed, and approved research studies. The Steering Committee includes four patient partners, and one of the two main network researchers is a patient partner. The VPPRN also set up several working groups that include patient partners and representatives from advocacy organizations.

Patient partners received online orientation training about the research process and how the network operates.

While a Partner Network in PCORnet, VPPRN participated in 13 studies.

Who is in the network?

As of March 2019, the network includes 2,760 patient partners.

Population (as of 03/31/19)


  • 79% white
  • 6% mixed race
  • 2.5% Asian
  • 2% black
  • 10% no information
  • 6% Hispanic


  • 76% female
  • 24% male

How does the network support future research?

The VPPRN has agreements with government health agencies and the pharmaceutical industry to help the network continue its work. It continues to support research by working with other PPRNs and other partners.


Patient-Powered Research Networks (PPRN): PPRNs are operated and governed by patient groups and their partners and are focused on particular conditions or populations.

PCORnet: PCORnet is a network of networks that brings together patients, clinicians, researchers, and healthcare systems to share information and participate in research.

More to Explore...

Project Information

Peter Merkel, MD, MPH
University of Pennsylvania
The Vasculitis Patient-Powered Research Network (V-PPRN)

Key Dates

March 2019

Study Registration Information


Has Results
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022