INSIGHTS Registry Collecting Health Data for Girls and Women with Turner Syndrome

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.

Inspiring New Science In Guiding Healthcare in Turner Syndrome Registry