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

Turner Syndrome Community Dialog through Photography

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.

Questions? Email researcher Ms. Kristin Schramer at comhealthlab@uwindsor.ca  

Turner Syndrome and Parenthood

TS and Parenthood online survey

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

Essential Informational Needs for a Turner Syndrome Diagnosis

Parent online survey

Medical provider online survey

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:

  • a parent whose daughter has been diagnosed with Turner syndrome (either before or after birth)

  • or a physician or genetic counselor who has delivered a prenatal or postnatal diagnosis of Turner syndrome,

Estimated time: 10-15 minutes

Once you submit this survey, there will be a link to an optional raffle for a $25.00 Visa gift card.

Questions? Email researcher

How women with Turner syndrome discuss fertility issues with their significant others

Telephone Interview

Request interview- email Paige McDunnah at pem007@jefferson.edu 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:

  • Have been diagnosed with Turner syndrome

  • Are between the ages of 18-40

  • Have discussed the fertility issues associated with Turner syndrome with at least one significant other

  • 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

INACTIVE STUDIES, expect insight updates within the TSSUS monthly online newsletters

The Turner Syndrome Society's mission is to

advance knowledge, facilitate research, and support all those touched by Turner syndrome.

Disclaimer- The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available through this web site is for general information purposes only.

Turner Syndrome Society of the United States  ~  11250 West Rd  Suite G  Houston TX 77065  ~ 1- 800-365-9944  ~    Info@turnersyndrome.org 

2021 All Rights Reserved