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

This article describes Patient-Powered Research Networks (PPRNs) across autoimmune conditions, registry infrastructures made up of patient advocacy groups, patient communities, medical researchers and other health stakeholders. The authors outline the history, challenges, and capacity of the four US-based PPRNs that make up the Autoimmune Research Collaborative (ARC). The article discusses how the flexibility of PPRNs allow them to cater to the needs of their patient partners and convene stakeholders to optimally contribute to patient-centered outcomes research. Despite some obstacles, PPRNs continue to engage new patients in research and conduct studies using patient-generated health data in order to contribute to clinical research on rheumatoid arthritis, spondyloarthritis, inflammatory bowel disease, multiple sclerosis, and vasculitis.


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