We’re delighted to share details of an exciting new study, and we warmly invite all girls and women attending the annual Turner Syndrome Support Society conference to take part.

A pilot study of Salivary corTisol and cortisone concentrations in women and girls with Turner Syndrome And unaffected female Relatives: Associations with cardiovasculaR and psYchological health.

What is this study about?

Recent research has found that women who have Turner Syndrome might have higher levels of cortisol than women who do not have Turner Syndrome. This may be important, as high cortisol levels increase the risk of developing high blood pressure, high glucose (sugar) levels, and over many years, heart disease. High cortisol levels also make it difficult to maintain a healthy weight.

We would like to learn more about cortisol levels in girls and women with Turner Syndrome, and whether there is any evidence that this causes them health problems. It will take a large research study for us to gain this knowledge, and this is the first step in that research plan. If you join this study, you will be helping us to plan our research studies of the future by telling us what you think about the tests that we do, how we do them and how the project could be improved. This will make it much more likely that the study will succeed in the future.

What will the study involve?

The study will take place in a private room at the conference centre, so everything will be quiet and confidential. If you choose to take part, here’s a quick overview of what to expect:
- We will ask you a few questions about your general health and any medicines you take.
- If you are over 18 years old, we will ask you to complete a brief quality of life questionnaire.
-We will record your current weight and height and measure your body composition (the balance between fat and muscle on your body).
- We will measure your blood pressure three times.
- We will ask you to provide three saliva (spit) samples on one day, either at home or while you are still at the conference.
- We will ask for your opinion about the above study activities.

What’s next?

Everyone registered to attend will receive a study information leaflet (sent via their preferred contact method noted on the registration form) at least two weeks before the conference. If you think you might like to take part in the study, we encourage you to bring along any details you have about your medical and medication history.

On Friday evening of the conference, we’ll share another overview of the study and make sure that anyone interested in participating can pick up an information leaflet then as well.

Thank you for taking the time to read about our study. We’re grateful for your interest and look forward to sharing more information with you soon.

The STARRY Study 2 Team