Inspiring New Science In Guiding Healthcare in Turner Syndrome Registry (INSIGHTS)

University of Colorado Denver (CU Denver)

Status: Enrolling

Conditions: Turner Syndrome

Treatments: Other: No intervention

Study type: Observational

Funder types: Other

Identifiers

NCT05052606

19-3027

Details and patient eligibility

About

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.

Enrollment: 5,000 estimated patients

Sex: Female

Volunteers: No Healthy Volunteers

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