Registry collecting health information for girls and women with Turner syndrome
INSIGHTS Registry - Inspiring New Science In Guiding Healthcare in Turner Syndrome
This study is collecting health information from girls and women with Turner syndrome to better understand their needs and improve future treatments.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 5000 (estimated) |
| Sex | Female |
| Sponsor | University of Colorado, Denver Academic / other |
| Locations | 10 sites (Aurora, Colorado and 9 other locations) |
| Trial ID | NCT05052606 on ClinicalTrials.gov |
What this trial studies
This registry study, known as INSIGHTS, gathers essential medical history and clinical care data for girls and women diagnosed with Turner syndrome across various clinics in the United States. It includes information on genetic tests, imaging, medications, and other health-related factors. The aim is to enhance understanding of the health status of individuals with Turner syndrome and to create a foundation for future research that addresses the needs of patients and their families.
Who should consider this trial
Good fit: Ideal candidates for this study are individuals diagnosed with Turner syndrome or its variants who meet specific clinical criteria.
Not a fit: Patients who do not have a confirmed diagnosis of Turner syndrome will not benefit from this study.
Why it matters
Potential benefit: If successful, this registry could lead to improved healthcare strategies and interventions for individuals with Turner syndrome.
How similar studies have performed: Other registry studies focusing on rare conditions have shown success in improving patient care and guiding future research, indicating a promising approach.
Eligibility criteria
Show full inclusion / exclusion criteria
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
Where this trial is running
Aurora, Colorado and 9 other locations
- Children's Hospital Colorado — Aurora, Colorado, United States (Recruiting)
- Children's National — Washington D.C., District of Columbia, United States (Recruiting)
- Lurie Children's — Glenview, Illinois, United States (Recruiting)
- University of Kansas — Lawrence, Kansas, United States (Recruiting)
- UNC Hospitals Children's Specialty Clinic — Chapel Hill, North Carolina, United States (Recruiting)
- Cincinnati Children's Hospital Medical Center — Cincinnati, Ohio, United States (Recruiting)
- Nationwide Childern's Hospital — Columbus, Ohio, United States (Recruiting)
- Children's Hospital of Philadelphia — Philadelphia, Pennsylvania, United States (Recruiting)
- The University of Texas Health Science Center at Houston — Houston, Texas, United States (Recruiting)
- Seattle Children's — Seattle, Washington, United States (Recruiting)
Study contacts
- Principal investigator: Shanlee M Davis, MD, PhD — Children's Hospital Colorado
- Study coordinator: Shanlee M Davis, MD, PhD
- Email: shanlee.davis@childrenscolorado.org
- Phone: 720-777-6073
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.