Digital Interventions to Build a Patient Registry for Rheumatology Research

By The ArthritisPower TeamNovember 2, 2021December 9th, 2021Research Registry

This article describes key issues, processes, and outcomes related to the development of a patient registry for rheumatology research using a digital platform to track useful data about patients’ conditions for their own use while contributing to research. ArthritisPower provides evidence of the value of digital interventions to build community support for research and to transform patient engagement and patient-generated data capture.

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PatientSpot registry infrastructure was funded through a Patient-Centered Outcomes Research Institute Award (PCORI Contract Number PPRN-1306-04811). PatientSpot (formerly known as Arthritis Power) was jointly developed by the nonprofit Global Healthy Living Foundation (GHLF), its associated CreakyJoints arthritis patient community, and rheumatology researchers at the University of Alabama at Birmingham (UAB). We reserve the right to change and add sponsors and partner organizations and we also reserve the right to change placement of text on the page. Created by CreakyJoints® patient community in collaboration with patient advocates at Global Healthy Living Foundation (GHLF) and researchers at the University of Alabama at Birmingham (UAB), Arthritis Power (now PatientSpot)’s past participation in PCORnet®, the National Patient-Centered Clinical Research Network, was supported through multiyear, multimillion-dollar Patient-Centered Outcomes Research Institute funding awards [PPRN-1306-04811]. Global Healthy Living Foundation (GHLF), the parent organization of PatientSpot, receives grants, sponsorships and contracts from pharmaceutical manufacturers and private foundations. A full list of GHLF funders is publicly available here: https://www.ghlf.org/our-partners.