Patient-Powered Research Networks of the Autoimmune Research Collaborative: Rationale, Capacity, and Future Directions

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  • Nowell, W.B.
    • Other Affiliation: Global Healthy Living Foundation
  • Merkel, P.A.
    • Other Affiliation: University of Pennsylvania
  • McBurney, R.N.
    • Other Affiliation: Accelerated Cure Project
  • Young, K.
    • Other Affiliation: Vasculitis Foundation
  • Venkatachalam, S.
    • Other Affiliation: Global Healthy Living Foundation
  • Shaw, D.G.
    • Other Affiliation: Vasculitis Foundation
  • Dobes, A.
    • Other Affiliation: Crohn's and Colitis Foundation
  • Cerciello, E.
    • Other Affiliation: Crohn's and Colitis Foundation
  • Kolaczkowski, L.
    • Other Affiliation: Accelerated Cure Project
  • Curtis, J.R.
    • Other Affiliation: University of Alabama at Birmingham
  • Kappelman, M.D.
    • Affiliation: University of North Carolina at Chapel Hill
Abstract
  • Patient-Powered Research Networks (PPRNs) are US-based registry infrastructures co-created by advocacy groups, patient research partners, academic investigators, and other healthcare stakeholders. Patient-Powered Research Networks collect information directly from patients to conduct and disseminate the results of patient-centered/powered research that helps patients make more informed decisions about their healthcare. Patient-Powered Research Networks gather and utilize real-world data and patient-reported outcomes to conduct comparative effectiveness, safety, and other research, and leverage the Internet to accomplish this effectively and efficiently. Four PPRNs focused on autoimmune and immune-mediated conditions formed the Autoimmune Research Collaborative: ArthritisPower (rheumatoid arthritis, spondyloarthritis, and other rheumatic and musculoskeletal diseases), IBD Partners (inflammatory bowel disease), iConquerMS (multiple sclerosis), and the Vasculitis PPRN (vasculitis). The Autoimmune Research Collaborative aims to inform the healthcare decision making of patients, care partners, and other stakeholders, such as clinicians, regulators, and payers. Illustrated by practical applications from the Autoimmune Research Collaborative and its constituent PPRNs, this article discusses the shared capacities and challenges of the PPRN model, and the opportunities presented by collaborating across autoimmune conditions to design, conduct, and disseminate patient-centered outcomes research.
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  • In Copyright
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  • Attribution-NonCommercial 3.0 United States
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  • Patient
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  • 1178-1653
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  • Adis

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