Learning More About Turner Syndrome (INSIGHTS Registry)
This study wants to collect medical information from individuals with Turner Syndrome at clinics across the country to learn more about the condition. We are gathering this data in a national registry to help improve the health and care for people with Turner Syndrome in the future.
Why this Research Matters
Turner Syndrome (TS) is a genetic condition that occurs when one of the two sex chromosomes is completely or partially missing. This study wants to create a patient registry about people who have TS from across the country so that we can better understand the condition. A patient registry is a place where health and other information from patients is gathered and stored for research. Our main goal is to be able to help improve the lives and standard of healthcare for people with Turner syndrome.
What to Expect
If you/your child join this study, we will review your health records. There are no extra study visits or procedures. You will just carry on with your normal care. If you want, you can join a list of people interested in future research studies about TS. You can also choose to fill out surveys. However, you can still be in the main registry even if you don't want to do these choices.
Study Duration
You can be a part of the registry for as long as you would like.
Who can Participate
You/your child can join this study if you have been diagnosed with Turner syndrome with a genetic test. People of any age can join this study.
Study ID
Protocol Number: 19-3027
Compensation Information
Meet the Team
Principal Investigator