A National Survey of Paediatric Turner Syndrome Services in the UK: Current Practice and Variability in Care.

ABSTRACT:

Introduction

Turner syndrome (TS) is a complex genetic condition requiring lifelong, multidisciplinary care. International consensus guidelines exist, but the organisation of paediatric TS services in the UK has not been systematically explored.

Methods

A structured electronic survey was distributed to paediatric endocrinology centres across the UK with responses collected from June 2023 to February 2024. The survey collected information on service configuration, staffing, multidisciplinary team (MDT) composition, transition pathways, use of consensus guidelines, and engagement with patient registries and support societies.

Results

Responses were received from 20 UK tertiary centres. Six out of 20 centres operated a dedicated TS clinic. MDTs were limited in most centr

SUBMITTER: Law JM 

PROVIDER: S-EPMC12904647 | biostudies-literature | 2026 Jan

REPOSITORIES: biostudies-literature