Paediatric-to-adult transition in inherited arrhythmia syndromes

Inherited arrhythmia syndromes (IAS)-including long QT syndrome (LQTS), catecholaminergic polymorphic ventricular tachycardia (CPVT), and Brugada syndrome (BrS)-are important causes of sudden cardiac death in the young. Although molecular diagnosis and cascade screening have improved prevention, adolescence and emerging adulthood remain vulnerable periods. Transition (planned readiness building) and transfer (handoff to adult services) are frequently complicated by loss to follow-up, medication lapses, and incomplete transmission of clinical and genetic information. IAS adds unique complexities, including age- and trigger-dependent risk, medication and device management, sports participation, pregnancy, and psychosocial burden with family implications. In addition, IAS represents a comparatively minor focus of the entire training programme for both paediatric and adult heart rhythm specialists and as such, the very 'home' for patients with IAS has fundamental weaknesses in its underlying competence. This review proposes a pragmatic transition-and-transfer pathway adaptable across healthcare systems. Transition should begin in early adolescence and focus on education (genotype-phenotype, trigger avoidance), adherence counselling, emergency planning, updated genetic documentation, and readiness assessment supported by a patient-held 'Health Passport' and digital tools. Transfer (typically around age 19) should be protected by one of three practical models when a dedicated lifelong longitudinal programme is unavailable: (i) a co-located joint paediatric-adult inherited arrhythmia clinic; (ii) a staged overlap model with parallel visits and warm handoffs; or (iii) a virtual co-management partnership linking local adult cardiology teams with regional IAS centres and networks (e.g. European Reference Networks). A designated transition coordinator and standardized transfer summary are essential to reduce information loss and improve continuity. The first 12 months post-transfer should include short-interval follow-up, medication reconciliation, re-education regarding new adult exposures, genetic re-evaluation, and psychosocial screening. Integrated transition and transfer pathways can reduce preventable morbidity and support safe participation in education, careers, pregnancy, and sport for young people living with IAS.