Naomi Kalume1,*, Shreya Papneja1, Jamie L. Jackson2, Richard Krasuski3, Anushree Agarwal4, Arwa Saidi5, David Harrison6,7, Matthew Lewis8, Anita Mathews1, Scott Leezer9, Ken Woodhouse10, Aliza Marlin10, Danielle M. Hile10, Ryan Joy O’Connor11, Ruth Phillippi1, Thomas Carton12, Anitha S. John1
Structural and Congenital Heart Disease, Vol.21, No.2, 2026, DOI:10.32604/schd.2026.081700
- 11 June 2026
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 patient perspectives. Although patient engagement is increasingly recognized as important, structured and sustainable engagement models in ACHD research remain limited. Objectives: The paper aims to describe the development and operational structure of the Congenital Heart Initiative (CHI) Engagement Network and to report outcomes from two annual patient-powered research meetings used to identify and refine ACHD research priorities. Methods: The CHI Engagement Network was established as a multi-stakeholder research infrastructure… More >