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Current Cardiology Reports

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22-12-2023 | Congenital Heart Disease (RA Krasuski and G Fleming, Section Editors)

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

Authors: Ruth Phillippi, Scott Leezer, Mindi Messmer, Danielle Hile, Anitha S. John

Published in: Current Cardiology Reports | Issue 1/2024

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.

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.

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Title: Patient Engagement in Research: Considerations in Creating a Registry for Adults with Congenital Heart Disease
Authors: Ruth Phillippi
Scott Leezer
Mindi Messmer
Danielle Hile
Anitha S. John
Publication date: 22-12-2023
Publisher: Springer US
Published in: Current Cardiology Reports / Issue 1/2024
Print ISSN: 1523-3782
Electronic ISSN: 1534-3170
DOI: https://doi.org/10.1007/s11886-023-02013-2

Keynote webinar | Spotlight on medication adherence

Springer Medicine

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

Abstract

Purpose of Review

Recent Findings

Summary

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Purpose of Review

Recent Findings

Summary

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