Development and Implementation of a Patient Engagement Network for Advancing Research in Adult Congenital Heart Disease

Q: What does this research mean for the field?

A patient engagement network can be successfully developed and implemented to address limitations in longitudinal data and patient incorporation in adult congenital heart disease research. Novelty: ClaimNovelty.METHODOLOGICAL. Consensus alignment: ConsensusAlignment.NEUTRAL.

Naomi Kalume; Shreya Papneja; Jamie L. Jackson; Richard Krasuski; Anushree Agarwal; Arwa Saidi; David Harrison; Matthew Lewis; Anita Mathews; Scott Leezer; Ken Woodhouse; Aliza Marlin; Danielle Hile; Ryan O’Connor; Ruth Phillippi; Thomas Carton; Anitha S. John

doi:10.32604/schd.2026.081700

January 1, 2026Structural and Congenital Heart DiseaseOpen Access

Development and Implementation of a Patient Engagement Network for Advancing Research in Adult Congenital Heart Disease

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Key Points

The central aim is to enhance research participation and data collection among adults with congenital heart disease by establishing a patient engagement network.
Developed a patient engagement network for adults with congenital heart disease (ACHD).
Implemented strategies to improve data collection and participation in research.
Encouraged active involvement of patients in shaping research priorities.
Increased patient engagement rates observed in research initiatives.
Enhanced quality of longitudinal data collection related to ACHD.
Improved awareness of psychosocial challenges among the ACHD community.

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Implication

Finds improved engagement in research for adults with congenital heart disease, suggesting better outcomes.

Abstract

Background: Adults with congenital heart disease (ACHD) experience lifelong medical and psychosocial challenges, yet research in this population is limited by incomplete longitudinal data and insufficient incorporation of pat... | Find, read and cite all the research you need on Tech Science Press

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Cite This Study

Kalume et al. (2026) studied this question.

synapsesocial.com/papers/6a2cf551faef96ed7f0575fa https://doi.org/10.32604/schd.2026.081700

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Development and Implementation of a Patient Engagement Network for Advancing Research in Adult Congenital Heart Disease

Key Points

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Implication

Abstract

Discussion

Cite This Study

Development and Implementation of a Patient Engagement Network for Advancing Research in Adult Congenital Heart Disease

Key Points

Ask about this paper

Implication

Abstract

Discussion

Cite This Study

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