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Patient Governance in a Patient-Powered Research Network for Adult Rheumatologic Conditions

By November 2, 2021December 9th, 2021Research Registry

Patient-Powered Research Networks (PPRNs) are a unique type of patient-powered patient registry for patient-centered outcomes research. Nowell et al. describe the governance structure of a newly formed PPRN and the activities undertaken prelaunch and postlaunch to evaluate and improve the engagement of patient stakeholders in governance. Members of an online community for patients are willing to share their expertise to participate in and shape research governance and are able to provide more specific recommendations for improvement than investigator-led pre-evaluation/post evaluation.

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