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The Increasing Focus on the Patient in Patient Registries.

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

This chapter of “21st Century Patient Registries: Registries for Evaluating Patient Outcomes: A User’s Guide: 3rd 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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