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

  • Congenital Heart Disease (RA Krasuski and G Fleming, Section Editors)
  • Published:
Current Cardiology Reports Aims and scope Submit manuscript

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

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Authors and Affiliations

  1. Division of Pediatric Cardiology, Children’s National Health System, 111 Michigan Ave, West Wing, 3rd Floor, Washington, D.C, 20010, USA

    Ruth Phillippi, Mindi Messmer & Anitha S. John

  2. CURA Strategies, Washington, DC, USA

    Scott Leezer

  3. Adult Congenital Heart Association, Philadelphia, PA, USA

    Danielle Hile

Authors
  1. Ruth Phillippi
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  2. Scott Leezer
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  3. Mindi Messmer
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  4. Danielle Hile
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  5. Anitha S. John
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Correspondence to Anitha S. John.

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Phillippi, R., Leezer, S., Messmer, M. et al. Patient Engagement in Research: Considerations in Creating a Registry for Adults with Congenital Heart Disease. Curr Cardiol Rep 26, 15–21 (2024). https://doi.org/10.1007/s11886-023-02013-2

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  • DOI: https://doi.org/10.1007/s11886-023-02013-2

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