Study summary
The INSIGHTS research study’s purpose is to create a large and diverse database using information from medical records to learn more about Turner syndrome and ways to improve the health outcomes of people with this condition.
Diseases studied
Turner syndrome, Monosomy X, mosaic Turner syndrome
Eligibility
Individuals with genetically confirmed Turner syndrome
Participation
Interested participants can enroll online or through a participating clinical site.
Procedures Involved
This includes consent for researchers to use information in the medical record for research purposes. The information is de-identified and stored in a secure database. There are also optional questionnaires and a one-time optional blood sample collection for biobanking.
Focus Areas
Track natural history, medical, educational, psychosocial issues and biomarkers
Current Enrollment
>800 individuals are enrolled, with the goal of achieving more than 1500 participants.
Contact information
Please contact the study coordinator at participating sites or go to our online self-enrollment link: INSIGHTS consent link to see if you’re eligible and complete the online consent form.