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