The Turner Syndrome Research Registry (TSRR)

“An essential tool for TS research”- 2016 Symposium researchers

There are over 800 TSRR participants and...

  • 36% have a diagnosed heart problem

  • 10% have aortic enlargement

  • 25% have high blood pressure

  • 18% have high cholesterol

Critical TS care questions remain unanswered because we need more collective information about those with Turner syndrome. 

The TS community sacrifices blood, time, tears, and money to support TS research. 

 

Please help advance the understanding of Turner syndrome today and in the future by joining the TS research registry. 

What is the Turner Syndrome Research Registry (TSRR)?

The TSRR collects and stores information about individuals diagnosed with Turner syndrome. People with TS or their guardians voluntarily join the registry by providing contact information as well as health information about themselves.

 

The TSRR is provided and maintained by the Turner Syndrome Society of the United States as a service to the TS community for advancing research. Our goal is to ensure the information within the TSRR is useful and sustainable for many years. Participant contact information and data that allows us to communicate with you is stored at TSSUS and information obtained through questionnaires and research studies is held at the University of Texas Health Center under the direction of Siddharth Prakash, MD. For ultimate security and privacy, a unique code connects information that allows someone to identify you to the information about your health and experiences.

How do I know if I'm already a participant in the TSRR?

 

Current participants receive emails inviting them to participate in research studies approved by the Scientific Advisory Board of TSSUS. You will also receive emails about study updates or summaries as well as information gained from the TSRR data itself.

Why is the TSRR Patient-Powered?

We use the term patient-powered because the TSRR was built to meet the expectations of those who participate in TS research.

  •  Participant information is securely stored and shared with TS researchers according to the wishes of the participant.

  • A participant may choose to stop sharing information or participating in a study at any time.

  • Researchers must share the information they gather about participants with other researchers. For instance, if one researcher obtains the clinical karyotype of a participant, then the participant's record is updated with the new information and available for future researchers. The TS community values responsible data sharing.

  • The TS community directs research efforts by providing information about research topic needs.

 

What does it mean to participate in the TSRR?

The following steps provide an example of what a participant can expect:

  1. Join the registry by filling out an informational questionnaire about health and experiences related to TS. The information will help identify if someone is a candidate for a study and should be invited by email to participate. Additionally, it eliminates the burden of answering the same questions for multiple studies.

  2. You will be invited to participate in approved TS research studies. We anticipate 2-3 studies a year will be approved by the Scientific Advisory Board. Not everyone will be invited to participate in all studies, for example, if you don't have diabetes you may not be invited to a study on TS and diabetes.

  3. You may be invited to fill out additional questionnaires throughout the year.

  4. You are encouraged to reach out to us at info@turnersyndrome.org or 800-365-9944 or 832-912-6006 if you have trouble joining, are not sure of how to answer a question, or have other needs related to the registry or a study. 

Why is the TS Research Registry needed (TSRR)?

The TSRR provides health care professionals and researchers with first-hand information about girls and women with TS, both individually and as a group, and over time, increase our understanding of TS. The TSRR collects information that can be used to track trends about the number of people with TS, treatments, and more. In addition, people may grant permission to be contacted about participating in clinical research. The general TS survey asks very basic questions about health history that would help determine whether someone is possibly eligible to join a research study.

 

Thank you for partnering to save lives and bring hope to those with conditions like aortic dissection, premature hearing loss, or cognitive deficits affecting their daily lives.  

TSRR

To register, please take the time to fill out the information below.

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