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Review
. 2024 Jan;26(1):15-21.
doi: 10.1007/s11886-023-02013-2. Epub 2023 Dec 22.

Patient Engagement in Research: Considerations in Creating a Registry for Adults with Congenital Heart Disease

Ruth Phillippi  1 , Scott Leezer  2 , Mindi Messmer  1 , Danielle Hile  3 , Anitha S John  4
Affiliations
Review

Patient Engagement in Research: Considerations in Creating a Registry for Adults with Congenital Heart Disease

Ruth Phillippi et al. Curr Cardiol Rep. 2024 Jan.

Abstract

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. 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.

Keywords: Congenital heart disease; Patient engagement; Registry.

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References

Papers of particular interest, published recently, have been highlighted as: • Of importance •• Of major importance
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