Currently enrolling patients in the following studies
Diabetes in Turner syndrome study
Nearly 70% of adults with Turner syndrome have differences in the way the body handles sugar, and this can progress to diabetes. We want to know why. We are recruiting females ages 3 and older with Turner syndrome to be tested for diabetes using blood tests and by asking study participants to wearing blood sugar sensors (continuous glucose monitors).
The purpose of this research is to better understand blood sugar problems that can be associated with Turner syndrome, which will improve how we test for diabetes and diabetes treatments.
InsighTS Research Registry
INSIGHTS is a registry study that collects key information on medical history for girls and women with Turner syndrome and the clinical care they receive. This includes genetic tests, imaging, medications, and more for hundreds of patients seen at a number of clinics across the US. In addition to learning a lot about the current state of health for individuals with TS, INSIGHTS serves as an infrastructure to conduct future studies that are meaningful to patients and their families.
Patients who enroll in the INSIGHTS registry give permission to use their medical records for research purposes. They can also choose to be included on recruitment list for future studies, participate in some surveys about themselves, and allow researchers to save their blood to use for future research. This information gets stored in a secure database. De-identified information can then be given to researchers approved by the Steering Committee. The Steering Committee will only approve proposals that will provide meaningful knowledge to the TS community.