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

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.