The Increasing Focus on the Patient in Patient Registries.

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

This chapter of “21^st Century Patient Registries: Registries for Evaluating Patient Outcomes: A User’s Guide: 3^rd Edition” by Daughtery et al. discusses the growing focus on patient-centeredness in clinical research, medical care, and regulatory sciences which can lead to the increase of availability and dissemination of evidence that can be used to inform health care decision-making. There are some challenges in the use of patient registries as highlighted by patients such as accessibility of participation, translation of non-English materials, and privacy concerns that should be addressed. This chapter provides an overview of important topics relating to patient-centeredness in registries, engaging patients as stakeholders, the use of digital health technologies, and other patient-centric designs.

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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.