INSIGHTS Registry - Inspiring New Science In Guiding Healthcare in Turner Syndrome
University of Colorado, Denver
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
- Age range
- Not specified
- Sex
- Female
- 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
Interventions
- OtherNo intervention
This study is an observational study without treatment intervention.
Locations (10)
- Children's Hospital ColoradoAurora, Colorado
- Children's NationalWashington D.C., District of Columbia
- Lurie Children'sGlenview, Illinois
- University of KansasLawrence, Kansas
- UNC Hospitals Children's Specialty ClinicChapel Hill, North Carolina
- Cincinnati Children's Hospital Medical CenterCincinnati, Ohio