Inspiring New Science In Guiding Healthcare in Turner Syndrome Registry

Purpose

INSIGHTS is a registry research study that collects key information on medical history for girls and women with Turner syndrome and the clinical care they receive. This includes genetic tests, imaging, medications, and more for hundreds of patients seen at a number of clinics across the US. In addition to learning a lot about the current state of health for individuals with TS, INSIGHTS serves as an infrastructure to conduct future studies are meaningful to patients and their families.

Condition

  • Turner Syndrome

Eligibility

Eligible Ages
All ages
Eligible Genders
Female
Accepts Healthy Volunteers
No

Inclusion Criteria

  1. Individuals with TS and TS variants as defined by the TS Clinical Practice Guideline definition (karyotype consistent with TS, phenotypic female, clinical feature(s) of TS) 2. Informed consent/assent as appropriate

Exclusion Criteria

a. Lack of a TS diagnosis on file

Study Design

Phase
Study Type
Observational [Patient Registry]
Observational Model
Other
Time Perspective
Prospective

Recruiting Locations

Children's National and nearby locations

Children's National
Washington, District of Columbia 20010
Contact:
Roopa Shankar, MD
roopakshankar@gwu.edu

More Details

NCT ID
NCT05052606
Status
Recruiting
Sponsor
University of Colorado, Denver

Study Contact

Shanlee M Davis, MD, PhD
720-777-6073
shanlee.davis@childrenscolorado.org