Purpose of Review

Patient engagement is defined as the meaningful involvement and active partnership of patients and key partners throughout the entire research project. This article reviews the importance of developing a patient engagement plan to promote better alignment of research with patients’ and clinicians’ real-world needs and concerns.

Recent Findings

The Congenital Heart Initiative (CHI) launched in 2020 is an entirely web-based longitudinal registry designed in close coordination with the adult congenital heart disease (ACHD) community it is intended to serve. Successful community engagement has resulted in real-world data being collected in large scale in a rare disease population.

Summary

Establishing patient engagement plans is critical to conducting patient-centered outcomes research. Continued improvement of community engagement strategies is needed to ensure the entire ACHD population is represented to facilitate future research and improved clinical care.

中文翻译：

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患者参与研究：为患有先天性心脏病的成人创建登记处的考虑因素

审查目的

患者参与被定义为患者和主要合作伙伴在整个研究项目中的有意义的参与和积极的合作。本文回顾了制定患者参与计划以促进研究与患者和临床医生的现实需求和关注点更好地结合的重要性。

最近的发现

2020 年启动的先天性心脏病计划 (CHI) 是一个完全基于网络的纵向登记系统，旨在与其服务的成人先天性心脏病 (ACHD) 社区密切协调。成功的社区参与导致在罕见疾病人群中大规模收集真实世界的数据。

概括

建立患者参与计划对于进行以患者为中心的结果研究至关重要。需要持续改进社区参与策略，以确保整个 ACHD 人群得到代表，以促进未来的研究和改善临床护理。