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INSIGHTS Registry for Turner Syndrome

This study, called INSIGHTS, is a registry that collects important health information from girls and women with Turner Syndrome (TS). It gathers details about your medical history, including genetic tests, imaging scans, and medications you've taken. The goal is to learn more about the health of individuals with TS and to help set up future studies that are important to patients and their families. You can join if you have a confirmed diagnosis of TS or a TS variant, as defined by medical guidelines. The study will track health conditions over a period of up to 15 years. The current status of this study is unclear, but it plans to include 5000 participants.

Study design
This is an observational study, meaning it collects information without giving any specific treatments. It aims to enroll 5000 women with Turner Syndrome.
What's involved
Not specified in the trial record.
Compensation
Not stated in the trial record.
Follow-up
Your health conditions will be tracked from the start of the study until a condition is observed, for up to 15 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT05052606

Inspiring New Science In Guiding Healthcare in Turner Syndrome Registry

Recruiting
Not specifiedAll AgesObservational
University of Colorado, Denver
~5,000 participants
Updated 2024-10-01 on ClinicalTrials.gov
What's tested:No intervention

At a glance

Recruiting sites
10 of 10 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Health conditions
Measured over From study start until condition observed, up to 15 years

Conditions

Turner Syndrome

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Turner Syndrome

NCT05052606

Where you'd take part

This study runs at 10 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Children's Hospital Colorado

    Aurora, Coloradostudy coordinator listed

    Recruiting

  • Children's Hospital of Philadelphia

    Philadelphia, Pennsylvaniastudy coordinator listed

    Recruiting

  • Children's National

    Washington D.C., District of Columbiastudy coordinator listed

    Recruiting

  • Cincinnati Children's Hospital Medical Center

    Cincinnati, Ohiostudy coordinator listed

    Recruiting

  • Lurie Children's

    Glenview, Illinoisstudy coordinator listed

    Recruiting

  • Nationwide Childern's Hospital

    Columbus, Ohiostudy coordinator listed

    Recruiting

  • Seattle Children's

    Seattle, Washingtonstudy coordinator listed

    Recruiting

  • The University of Texas Health Science Center at Houston

    Houston, Texasstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

  • Shanlee M Davis, MD, PhD · PRINCIPAL_INVESTIGATOR · Children's Hospital Colorado

Who to contact

Shanlee M Davis, MD, PhD
[email protected]
720-777-6073
Email the study team

Opens a ready-to-send draft in your own email app — review before sending.

What this trial measures

  • Health conditionsFrom study start until condition observed, up to 15 years

    Average number of chronic diagnoses per person