Turner Syndrome Research
Please consider participating in Turner syndrome research as it's vitally important for our community to learn from one another.
ACTIVE STUDIES
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.
You are eligible to participate if you meet the following criteria:
● Diagnosed with TS
● 18-25 years of age
● Live in the US
If you choose to participate, you will take an anonymous online survey that asks questions about:
• Your age of diagnosis
• Your karyotype
• Any mental health and developmental conditions
• Any treatment for mental health and developmental conditions
• Any resources or services you think young adults with TS would benefit from
It is unclear if participants will receive any direct benefits. However, participants can enter a raffle for one of three $50 Amazon gift cards. The survey closes on April 30 If you have any questions, please email Mira Blumen at
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.
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.
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)
Request to join the study: email researcher Ms. Kristin Schramer at comhealthlab@uwindsor.ca
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.
Requirements: 18 years old or older, have Turner syndrome, live in Canada or the U.S., and have access to a phone with digital camera capabilities or digital camera.
Individuals who submit their photography as part of this project receive a photo book based on the project, those who participate in the focus group to discuss their photography will receive a $10 gift card of their choice, and those that participate in the optional follow-up interview will receive an additional $10 gift card of their choice.
How women with Turner syndrome discuss fertility issues with their significant others (Feb. 2021)
Request telephone interview- email Paige McDunnah at or call 860-502-5252
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.
Requirements:
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Have been diagnosed with Turner syndrome
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Are between the ages of 18-40
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Have discussed the fertility issues associated with Turner syndrome with at least one significant other
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Are able to participate in a telephone interview (approximately 30 minutes)
Participants will be entered into a raffle to win a $25 Visa gift card
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.
Requirements: 18 years old or older and have Turner syndrome. Questions? Email researcher
TS and Parenthood online survey
INACTIVE STUDIES, expect insight updates within the TSSUS monthly online newsletters
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.
Requirements:
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a parent whose daughter has been diagnosed with Turner syndrome (either before or after birth)
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or a physician or genetic counselor who has delivered a prenatal or postnatal diagnosis of Turner syndrome,
Estimated time: 10-15 minutes. Questions? Email researcher