Continuity of Care in Klinefelter Syndrome: Age-Adapted Modules for Standardized Clinical Data Collection (I-KS)
Understanding and improving care for people with Klinefelter syndrome: Klinefelter syndrome (KS) affects approximately 1 in 600 males but often remains undiagnosed. To improve lifelong care, experts developed structured data collection tools for different age groups. This approach enhances clinical care, supports research, and facilitates smoother transitions from pediatric to adult healthcare.
Authors
- Claudia Boettcher (ORCID: https://orcid.org/0000-0001-5494-2616)
- Sabine E Hannema (ORCID: https://orcid.org/0000-0002-8996-0993)
- Corinna Grasemann (ORCID: https://orcid.org/0000-0003-1793-4603)
- Leigh Breen (ORCID: https://orcid.org/0000-0001-6669-4816)
- Angela Lucas-Herald (ORCID: https://orcid.org/0000-0003-2662-1684)
- Francesco Carlomagno (ORCID: https://orcid.org/0000-0001-5611-4101)
- S. Faisal Ahmed (ORCID: https://orcid.org/0000-0003-0689-5549)
- Claus Højbjerg Gravholt (ORCID: https://orcid.org/0000-0001-5924-1720)
- Jens Bauer
- Malika Alimussina (ORCID: https://orcid.org/0000-0002-4338-904X)
- Lise Aksglæde (ORCID: https://orcid.org/0000-0001-7885-7467)
- Inas Mazen (ORCID: https://orcid.org/0000-0003-1335-9728)
- Jillian Bryce
- Andrea Maria Isidori (ORCID: https://orcid.org/0000-0002-9037-5417)
- Anna Nordenstroem
- Joline Wernsmann
Institutions
- Karolinska University Hospital (SE)
- Johannes Gutenberg University Mainz (DE)
- Policlinico Umberto I (IT)
- Aarhus University Hospital (DK)
- Copenhagen University Hospital (DK)
- Rigshospitalet (DK)
- University Medical Center of the Johannes Gutenberg University Mainz (DE)
- University Children’s Hospital Bern (CH)
- National Research Centre (EG)
- Katholisches Klinikum Bochum (DE)
- University of Lincoln (GB)
- University of Glasgow (GB)
- Sapienza University of Rome (IT)
- Vrije Universiteit Amsterdam (NL)
Publication Details
- Journal
- Endocrine Connections
- Published
- 2025-09-29
- DOI
- https://doi.org/10.1530/ec-25-0196
- Citations
- 1
- Primary Topic
- Genetic and Clinical Aspects of Sex Determination and Chromosomal Abnormalities
- Type
- article
- Field-Weighted Citation Impact
- 1.82