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Inspiring New Science In Guiding Healthcare in Turner Syndrome Registry

RECRUITINGSponsored by University of Colorado, Denver
Actively Recruiting
SponsorUniversity of Colorado, Denver
Started2020-05-20
Est. completion2025-10
Eligibility
SexFEMALE
Healthy vol.Accepted
Locations10 sites

Summary

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.

Eligibility

Sex: FEMALEHealthy volunteers accepted
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

Conditions2

Heart DiseaseTurner Syndrome

Locations10 sites

Children's Hospital Colorado
Aurora, Colorado, 80045
Shanle M Davis, MD, PhD720-777-6073shanlee.davis@childrenscolorado.org
Children's National
Washington D.C., District of Columbia, 20010
Roopa Shankar, MDroopakshankar@gwu.edu
Lurie Children's
Glenview, Illinois, 60026
Wendy J Brickman, MDwbrickman@luriechildrens.org
University of Kansas
Lawrence, Kansas, 66045
Kelsie Kelly, MDkkelly3@kumc.edu
UNC Hospitals Children's Specialty Clinic
Chapel Hill, North Carolina, 27514
Jennifer Law, MD, MSCRlawj@med.unc.edu

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