Continuity of care in Klinefelter syndrome: age-adapted modules for standardized clinical data collection (I-KS).

ABSTRACT:

Abstract

Klinefelter syndrome (KS) is an underdiagnosed condition, affecting approximately 1 in 600 male births. Despite its relatively high prevalence, more than two-thirds of affected individuals remain undiagnosed, and clinical awareness is limited. KS presents with a highly variable phenotype, requiring lifelong, multidisciplinary care that spans pediatric and adult specialties. However, care is often fragmented, and there is no standardized approach to transitioning individuals from pediatric to adult healthcare services. Structured, longitudinal data collection is essential to better understand KS across the lifespan and to facilitate the transition process. To address this need, a group of clinical experts (pediatric and adult specialists) and patient representatives develop

SUBMITTER: Grasemann C 

PROVIDER: S-EPMC12538116 | biostudies-literature | 2025 Oct

REPOSITORIES: biostudies-literature