TSSUS is the largest organization – worldwide – supporting the Turner syndrome community.
The Turner Syndrome Society of the United States: Advancing knowledge, facilitating research, and supporting all those touched by Turner syndrome.
Turner Syndrome Research
and the Turner Syndrome Research Registry (TSRR)
TSSUS Members are so very important to advances in care brought about through TS Research. To all of our community who make successful studies possible, thank you for your invaluable participation.
TS Researchers encouraged TSSUS to collect health information from people with TS to identify the number of people with certain conditions and those willing to participate in a study. Over 1,400 people are now enrolled in the TSSUS Research Registry, helping to advance TS research.
The exciting part of the TS Research Registry is that the information a TSSUS-approved researcher collects about you is saved in the registry and available for future research teams. Any TS researcher can apply to use the registry, and the TSSUS Scientific Advisory Board reviews the research proposals. People like you have already supported many studies, including brain and behavior, estrogen, diabetes, heart, and more!
Participate
Participate
in TS Research
and
Critical questions remain unanswered about TS care, but with your help, we are learning more every day.
3 simple steps to support TS research!
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Enroll in the TS Research Registry. Allow 3 weeks to receive an email
from tsregistry@ turnersyndrome.org with a link to the health survey. -
Complete the health survey and optional surveys.
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Respond to study invitations and participate in TS research.
Read common questions and answers about the registry here or below
Participa en la investigación de TS
and
Quedan preguntas críticas sin respuesta sobre la atención del ST, pero con su ayuda, estamos aprendiendo más cada día.
¡3 sencillos pasos para apoyar la investigación del ST!
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Inscríbete en el Registro de Investigación TS. Espere 3 semanas para recibir un correo electrónico de tsregistry@ turnersyndrome.org con un enlace a la encuesta de salud.
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Complete la encuesta de salud y las encuestas opcionales.
-
Responder a las invitaciones de estudio y participar en la investigación del ST.
Lea preguntas y respuestas comunes
sobre el registro aquí o debajo
For Researchers
Thank you for supporting TS research; we look forward to working with you! The TS Research Registry was created with both the research and the participant in mind. The virtuous cycle of data supports the needs of researchers and limits research fatigue for participants. Researchers apply to use different levels of data, and new data collected will remain in or be imported into the registry for future access.
It's important that you review our application before finalizing your study so that we may effectively partner with you. Researchers have stated that the insights and support of the TSSUS Scientific Advisory Board improved their study plan and outcomes. TSSUS only supports recruitment for studies that utilize the TS Research Registry or obtained a letter of support from us.
The Registry has 1,400 participant records, 100+ of which contain genome sequencing data, many with Globally Unique Identifiers (GUID) and a small percentage with confirmed karyotypes.
You may propose using data currently in the registry (see the data dictionary), or you may recruit registry participants for new studies.
Please use the inquiry form below to submit your research ideas and needs. The SAB will review your proposal and contact you.
Turner Syndrome Research Registry Inquiry Form
TS Research Registry: Creating equipoise between investigators and participants
Turner Syndrome Research Registry Data Dictionary
Turner Syndrome Research Registry Application
Laboratory Guideline for Turner Syndrome
Please note: overhead (indirect) costs are limited to 10% of the total direct cost of all research/grant projects funded by TSSUS.
Research Opportunities and Updates
ACTIVE STUDIES
The Turner Syndrome Research Registry (Ongoing)
Join the online registry in less than 15 minutes.
Genetic Influences on Neurocognitive Profiles in Women with Turner Syndrome (March 2024)
If you joined the Turner Syndrome Research Registry (TSRR) and are over 18, you may have received an email requesting your participation in the research study by Dr. Rebecca Knickmeyer, Associate Professor of Pediatrics and Human Development at Michigan State University. TSSUS is proud to collaborate with this project and thankful for those participating in the Turner Syndrome Research Registry. Video
RESEARCH RESULTS FROM INACTIVE STUDIES
Study participants are the foundation of TS research, and we THANK you and the researchers for helping us learn more about TS one study at a time. The following are the latest research results.
Pregnancy, Surrogacy & Adoption
Genetic Counseling for Mosaicism
Transition to Independence and Adult Care
Learn about the Registry
“The Turner Syndrome Research Registry is an essential tool for TS research.”
- 2016 TS symposium researchers
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. Participant contact information 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.
The Turner Syndrome Society of the United States Scientific Advisory Board meets regularly to ensure the registry advances TS research. They ensure the information collected is secure, useful, and accessible to TS researchers. The Scientific Advisory Board works personally with prospective researchers to ensure quality studies that support advancing TS research.
The TSRR is patient-powered because participant information is shared with TS researchers based on the consent given upon registration. A participant may choose to stop sharing information or participating at any time. Researchers are required to share the information they gather. For instance, if one researcher obtains the karyotype of a participant, then the participant's record is updated in the TSRR with the new information and available for future TSRR researchers. The TS community values responsible data sharing. The TS community directs research efforts by providing information about research topic needs.
How do I know if I'm already a participant in the TSRR?
You would have filled out a registration form, asking for your permission for the registry to utilize your health information. You would then fill out a health survey with basic information. You may receive emails from time to time asking for you to participate in certain studies. If you are unsure if you are registered in the TS Research Registry, you can email tssus@turnersyndrome.org and we can let you know.
What may a participant of the TSRR expect?
• 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 eliminates the burden of you answering the same questions for multiple studies.
• You will be invited by email to participate in certain studies. We anticipate 2-3 studies a year will be approved by the Scientific Advisory Board. Not all participants 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.
• 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, or 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 people with TS, both individually and as a group, and over time, increases our understanding of TS. 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. The data collected through research studies support researchers with clinical health information that creates a virtual cycle of targeted TS data.
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.