Actively Recruiting
INSIGHTS Registry - Inspiring New Science In Guiding Healthcare in Turner Syndrome
Led by University of Colorado, Denver · Updated on 2024-10-01
5000
Participants Needed
10
Research Sites
N/A
Total Duration
On this page
AI-Summary
What this Trial Is About
Researchers are collecting important health information on girls and women with Turner syndrome through the INSIGHTS registry. This study gathers medical history details, including genetic tests, imaging, and medications, from many patients seen at clinics across the US. The goal is to better understand the current health status of those with Turner syndrome and to build a foundation for future patient-centered studies. This study is observational, meaning it does not involve any treatments or interventions. Instead, it tracks health conditions and clinical care details over time. Participants' medical records and test results are collected and analyzed to learn about various health issues related to Turner syndrome, such as mental health diagnoses, hearing loss, and cardiometabolic conditions. During the study, researchers review participants' health data for up to 15 years to observe the development of specific conditions. They monitor outcomes like prevalence of premature ovarian insufficiency, obesity, and hypertension. Participants provide consent to share their medical information, helping researchers gain insights that may guide future healthcare for Turner syndrome. There is no active treatment or change to care during this study.
CONDITIONS
Brief Title
Inspiring New Science In Guiding Healthcare in Turner Syndrome Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Individuals with Turner syndrome or Turner syndrome variants as defined by the Turner Syndrome Clinical Practice Guideline (karyotype consistent with Turner syndrome, phenotypic female, clinical features of Turner syndrome)
- Ability to provide informed consent or assent as appropriate
You will not qualify if you...
- Lack of a Turner syndrome diagnosis on file
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person)
Duration - Up to 15 years
Participants with Turner syndrome are observed over time to monitor health conditions and related diagnoses.
Periodic visits as determined by the study schedule
Trial Site Locations
Total: 10 locations
1
Children's Hospital Colorado
Aurora, Colorado, United States, 80045
Actively Recruiting
2
Children's National
Washington D.C., District of Columbia, United States, 20010
Actively Recruiting
3
Lurie Children's
Glenview, Illinois, United States, 60026
Actively Recruiting
4
University of Kansas
Lawrence, Kansas, United States, 66045
Actively Recruiting
5
UNC Hospitals Children's Specialty Clinic
Chapel Hill, North Carolina, United States, 27514
Actively Recruiting
6
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States, 45229
Actively Recruiting
7
Nationwide Childern's Hospital
Columbus, Ohio, United States, 43205
Actively Recruiting
8
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States, 19104
Actively Recruiting
9
The University of Texas Health Science Center at Houston
Houston, Texas, United States, 77030
Actively Recruiting
10
Seattle Children's
Seattle, Washington, United States, 98105
Actively Recruiting
Research Team
S
Shanlee M Davis, MD, PhD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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