RecruitingNCT05052606

Inspiring New Science In Guiding Healthcare in Turner Syndrome Registry

INSIGHTS Registry - Inspiring New Science In Guiding Healthcare in Turner Syndrome


Sponsor

University of Colorado, Denver

Enrollment

5,000 participants

Start Date

May 20, 2020

Study Type

OBSERVATIONAL

Conditions

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: FEMALE

Inclusion Criteria2

  • 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)
  • Informed consent/assent as appropriate

Exclusion Criteria1

  • a. Lack of a TS diagnosis on file

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Interventions

OTHERNo intervention

This study is an observational study without treatment intervention.


Locations(10)

Children's Hospital Colorado

Aurora, Colorado, United States

Children's National

Washington D.C., District of Columbia, United States

Lurie Children's

Glenview, Illinois, United States

University of Kansas

Lawrence, Kansas, United States

UNC Hospitals Children's Specialty Clinic

Chapel Hill, North Carolina, United States

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, United States

Nationwide Childern's Hospital

Columbus, Ohio, United States

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

The University of Texas Health Science Center at Houston

Houston, Texas, United States

Seattle Children's

Seattle, Washington, United States

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NCT05052606


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