NCT05078892|Completed
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Sponsor study identifier
Secondary identifiers
observational
20
1 country
1
Study Start
August 25, 2022
Actual (reported)Primary Completion
June 12, 2023
Actual (reported)Study Completion
June 12, 2023
Actual (reported)Background: Turner syndrome (TS) is caused by the partial or complete absence of one of the two X chromosomes in all cells or a portion of cells. Adolescents and young adults (AYAs) with TS and their families are not routinely counseled about fertility issues and options. Researchers want to learn more about the attitudes of AYAs with TS and their parents or guardians regarding future fertility. Objective: To create and distribute a survey for AYAs with TS and their parents or guardians that will improve understanding about their attitudes toward fertility, fertility preservation, and options for building a family. Eligibility: Female AYAs aged 12-25 years with TS, and parents or guardians of AYAs with TS. Design: Participants will be put into 3 focus groups: females ages 12-17 with TS; females ages 18-25 with TS; and parents or guardians of AYAs with TS. Each focus group session will be held via Zoom. Participants can use video or just audio for the session. They will use their first name. If they prefer, they can use a pseudonym. Each group will meet once. The session will last 90 minutes. Participants will receive a draft of the survey. The survey questions ask about fertility and pregnancy. Participants will evaluate the usefulness and relevance of each question. They will be asked if any question should be changed. The survey will be finalized based on their feedback. The final survey will be distributed through TS groups. Participation will last for 1 day....
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
June 12, 2023
Actual (reported)Click on a node to explore related trials.
Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
October 14, 2021
Actual (reported)October 15, 2021
Actual (reported)August 25, 2022
Actual (reported)June 12, 2023
Actual (reported)June 12, 2023
Actual (reported)SURVEY CONTENT
To compare differences in survey response scores between adolescents/young adults with TS and their parents regarding survey content areas (i) medical/surgical fertility preservation procedures with unknown outcomes.
Baseline
SURVEY CONTENT
Differences in attitudes between AYA with TS and their parents regarding survey content area (i) medical/surgical fertility preservation procedures with unknown outcomes
Baseline
RESPONSE SCORES
Baseline
RESPONSE SCORES
Baseline
Adolescents 12-17 with Turner Syndrome
Parents of Adolescents (12-17)with Turner Syndrome
Young Adults (18-25)with Turner Syndrome
For the three focus groups, participants will consist of adolescents and young adults with Turner Syndrome and their parents/guardians recruited from members of the Turner Syndrome Global Alliance (TSGA) by their leadership. An IRB-approved flyer will be sent to the TSGA for distribution to their members. The Fertility Attitudes survey will be disseminated by various TS support groups through a link for the survey webpage and an IRB-approved flyer with a QR code and link to an online survey webpage via the Clinical Trials Survey System (CTSS) provided to their members via their email as well as through their social media site (Facebook page).
National Institute of Child Health and Human Development (NICHD)
Bethesda, Maryland, 20892, United States
Veronica Gomez-Lobo, M.D.
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
20 participants (actual enrollment reported by the registry).
First Submitted
October 14, 2021
First Posted
October 15, 2021
Study Start
August 25, 2022
Actual (reported)Fertility in Healthy Premenopausal Women
Contact the study team to confirm eligibility.
Primary Completion
June 12, 2023
Actual (reported)Study Completion
June 12, 2023
Actual (reported)Last Updated
June 18, 2023
Record last verified: 2023-06
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Source: ClinicalTrials.gov.
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