Continuity of Care in KS: Age-Adapted Modules for Standardized Clinical Data Collection
Article Title: Continuity of Care in Klinefelter Syndrome: Age-Adapted Modules for Standardized Clinical Data Collection (I-KS)
Authors: Grasemann, Gravholt, Breen, Aksglaede, Lucas-Herald, Alimussina, Boettcher, Wernsmann, Bauer, Bryce, Carlomagno, Hannema, Isidori, Mazen, Nordenstroem, and Ahmed
Date of Publication: September 25, 2025
“The structured templates aim to support healthcare professionals in providing comprehensive, age-appropriate care while enabling systematic data collection for research. These modules provide a framework for tracking key clinical parameters during the transition from pediatric to adult care, ensuring continuity and optimizing long-term health outcomes for individuals with KS. Implementation of these modules in clinical registries will facilitate pooled analyses, helping to address unresolved clinical questions and improve care across the lifespan.”