Turner Syndrome Research
We support researchers
Our community's understanding of TS results from dedicated TS researchers and those with TS who participate in research.
The Turner Syndrome Research Registry contains over 1,000 health surveys from people willing to participate in research. Over 100 records contain genome sequencing data. Our Scientific Advisory Board welcomes TS researchers to apply to use the registry.
Turner Syndrome Research Registry Application
TSSUS supports research studies that align with the registry. If you would like us to support your research needs please submit an application or contact us, at tsregistry@turnersyndrome.org for more information.
Turner Syndrome Research Registry Overview
Detailed information about how the TSRR supports TS research.
Laboratory Guideline for Turner Syndrome
Provides laboratory guidance for the diagnosis/study of patients with Turner syndrome and its variants.
Critical TS care questions remain unanswered because we need more collective information about those with Turner syndrome.
The Turner Syndrome Research Registry is an online collection of information submitted and controlled by participants. If you have TS, we encourage you to join or learn more about it. Parents or legal guardians may register children as well.
“The Turner Syndrome Research Registry is an essential tool for TS research.”
- 2016 TS symposium researchers
We help
you to participate in research
Research Opportunities for the TS Community
Please consider participating in Turner syndrome research as it's vitally important for our community to learn from one another.
ACTIVE STUDIES
The Turner Syndrome Research Registry (Ongoing) Find out more or join now
Join the online registry in less than 15 minutes. You'll be invited to fill out a health survey and participant in projects as approved by the TSSUS scientific advisory board. Your participation will support TS research for years to come.
Premature Ovarian Insufficiency (October 2021) view flyer
The purpose of the study is to determine why premature ovarian insufficiency (ovaries stop functioning normally before age 40 years of age) and if ovarian tissue freezing will help to preserve fertility in those with TS.
Eligible participants are girls with TS ages 4 to 12 years who have not started puberty and are at risk of premature ovarian insufficiency due to Turner syndrome.
Genetic Influences on Neurocognitive Profiles in Women with Turner Syndrome (March 2021)
If you joined the Turner Syndrome Research Registry (TSRR) and are over 18 years of age, 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 who participate in the Turner Syndrome Research Registry.
INACTIVE STUDIES
Expect insight updates within the TSSUS monthly online newsletters
Wellbeing Inventory for Young Adults with Turner Syndrome (April 2021)
The purpose of the study is to learn more about the specific mental health needs of young adults with TS.
Transitioning into Adulthood with Hearing Loss (April 2021)
If you are 18 years and older and have experienced hearing loss, you may participate in a research study of hearing loss and its impact on your first job. The short survey takes between 5 to 10 minutes to complete and is conducted by researchers at Wayne State University.
Online Study Survey available for Atypical Features of Turner Syndrome (March 2021)
If you have Turner syndrome and feel your features are a little different than the typical characteristics of TS, please participate in a short survey designed by researchers at Johns Hopkins Medicine.
Turner Syndrome Community Dialog through Photography (February 2021)
Do you love photography? As part of the study, you will be asked to take pictures to promote community dialog, participate in a group discussion to discuss your photography with other participants, and take part in an optional individual follow-up interview about your experience. All aspects of this study will be conducted online using a web conference and online survey software.
How Women with Turner Syndrome Discuss Fertility Issues with their Significant Others (Feb. 2021)
The aim of the study is to understand how people with Turner syndrome feel about parenthood and the different ways of becoming a parent. The results should inform the medical community about the needs of the TS community regarding family-building options.
Turner Syndrome and Parenthood (December 2020)
The aim of the study is to understand how people with Turner syndrome feel about parenthood and the different ways of becoming a parent. The results should inform the medical community about the needs of the TS community regarding family-building options.
Essential Informational Needs for a Turner Syndrome Diagnosis (November 2020)
The aim of the study is to assess what information is most important for parents to have when receiving an initial diagnosis of Turner syndrome for their child. Information will reveal how provider and parent perspectives about an initial diagnosis of Turner syndrome compare and contrast so healthcare providers may better understand the needs of parents in the future.
Please note: overhead (indirect) costs are limited to 10% of the total direct cost of all research/grant projects funded by TSSUS.