Research Studies

The aim of the INSIGHTS Registry is to establish a national, multicenter database with clinical data for individuals with Turner syndrome. Specifically: 1. Measure various chronic illnesses in individuals with Turner syndrome including premature birth, heart disease, sleep problems, infertility, and others. 2. Determine if there is an association between these chronic illnesses and other variables like karyotype, family history, etc. 3. Measure the impact of these chronic illnesses by looking at medications being prescribed, clinic visits, hospitalizations, etc. 4. Assess if individuals with Turner syndrome are getting clinical care in alignment with the Turner Syndrome Clinic Practice Guidelines 5. Support improvement in future research by having uniform data and a group of individuals who have agreed to be contacted about future studies

Participants who join the INSIGHTS Registry are agreeing to have their medical records be used for research. There are no additional study visits, etc. – participants just continue with their usual clinical care. In addition to the basic registry, individuals can join a recruitment list for future research or to receive annual questionnaires. You can join the basic registry without doing these options as well.