Inspiring New Science In Guiding Healthcare in Turner Syndrome Registry

Launched by UNIVERSITY OF COLORADO, DENVER · Sep 13, 2021

Keywords

ClinConnect Summary

The INSIGHTS study is a research project focused on understanding Turner syndrome, a condition that affects girls and women. This study collects important information about the medical history and care of individuals with Turner syndrome, including details about genetic tests, imaging studies, and medications they receive. By gathering this data from many patients across different clinics in the United States, the study aims to improve our knowledge about the health of those with Turner syndrome and help plan future research that will be meaningful for patients and their families.

To participate in this study, participants must have a diagnosis of Turner syndrome or related variations, as defined by specific medical guidelines, and be female. They will need to provide consent, meaning they agree to be part of the study. Those who do not have a confirmed diagnosis of Turner syndrome are not eligible. If someone qualifies to join, they can expect to share their medical history and receive care that is tailored to their needs. Overall, the INSIGHTS study is a great opportunity for individuals with Turner syndrome to contribute to important research that could lead to better healthcare and support for themselves and others in the future.

Gender

FEMALE

Eligibility 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