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. 2021 Nov;14(6):699-710.
doi: 10.1007/s40271-021-00515-1. Epub 2021 Apr 27.

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

W Benjamin Nowell  1 , Peter A Merkel  2 , Robert N McBurney  3 , Kalen Young  4 , Shilpa Venkatachalam  5 , Dianne G Shaw  4 , Angela Dobes  6 , Emily Cerciello  6 , Laura Kolaczkowski  3 , Jeffrey R Curtis  7 , Michael D Kappelman  8
Affiliations

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

W Benjamin Nowell et al. Patient. 2021 Nov.

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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Conflict of interest statement

W. Benjamin Nowell has received research support from AbbVie, Amgen, Eli Lilly, Pfizer, and PCORI. Peter A. Merkel has been a consultant for AbbVie, AstraZeneca, Boeringher-Ingelheim, Bristol-Myers Squibb, ChemoCentryx, CSL Behring, Forbius, Genentech/Roche, Genzyme/Sanofi, GlaxoSmithKline, InflaRx, Jannsen, Kiniksa, Kyverna, Magenta,Novartis, Pfizer, Sparrow, Takeda, and Talaris, has received research support from AbbVie, AstraZeneca, Boeringher-Ingelheim, Bristol-Myers Squibb, ChemoCentryx, Forbius, Genentech/Roche, Genzyme/Sanofi, GlaxoSmithKline, InflaRx, and Sanofi, and has received royalties from UpToDate. Robert N. McBurney was a consultant for EMD Serono (consulting fees have been donated to the Accelerated Cure Project [ACP]), the Chief Research Officer ACP, and the Research Lead for the iConquerMS People-Powered Research Network. The ACP has received grants, collaboration funding, payments for use of assets, or in-kind contributions from the following companies: EMD Serono, Novartis, Sanofi/Genzyme, Biogen, Genentech, AbbVie, Octave Bioscience, GlycoMinds, Pfizer, MedDay, AstraZeneca, Teva, Mallinckrodt, MSDx, Regeneron GeneticsCenter, BC Platforms, and Bristol-Myers Squibb (Celgene). The ACP has also received funding from PCORI, the National MS Society, and the Italian MS Society. Shilpa Venkatachalam has received research support from PCORI. Dianne G. Shaw and Kalen Young have no conflicts of interest that are directly relevant to the content of this article. Angela Dobes and Emily Cerciello have received research support from PCORI and report that neither they nor their employer, the Crohn’s & Colitis Foundation, have any conflicts of interest or relationships with industry. Laura Kolaczkowski was a consultant for EMD Serono and Genentech. Jeffrey R. Curtis has been a consultant for AbbVie, Amgen, Bristol-Myers Squibb, Corrona, Eli Lilly, Janssen, Myriad, Pfizer, Roche, Regeneron, Radius, and UCB, and has received research support from AbbVie, Amgen, Bristol-Myers Squibb, Corrona, Eli Lilly, Janssen, Myriad, Pfizer, Roche, Regeneron, Radius, and UCB. Michael D. Kappelman has been a consultant for Abbvie, Janssen, Pfizer, Lilly, and Takeda, a shareholder for Johnson & Johnson, and has received research support from Pfizer, Takeda, Janssen, Abbvie, Lilly, Genentech, Boehringer Ingelheim, Bristol-Myers Squibb, Celtrion, and Arenapharm.

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