Health disparities in Turner Syndrome: UTHealth Turner Syndrome Research Registry.

ABSTRACT:

Aim

Turner Syndrome (TS) is caused by partial or complete absence of the second sex chromosome in a phenotypic female. TS is associated with recognizable congenital anomalies and chronic health conditions. The principal objective of this study was to evaluate the health-related knowledge and insight of participants.

Methods

In 2015, we founded the UTHealth Turner Syndrome Research Registry for longitudinal follow-up of individuals with TS. Study participants were recruited from UTHealth Houston clinics and the Turner Syndrome Society of the United States. Participants completed a questionnaire about demographics, karyotype, congenital anomalies, health history, frequency of contact with care providers, and knowledge of care providers about TS.

Results

Forty percent of

SUBMITTER: Donate P 

PROVIDER: S-EPMC10398636 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature