Interested in Participating in Our Research?
University of Kansas' Life Span Institute is conducting research to learn about the transition to adulthood for young adults with fragile X syndrome (FXS), as well as the experiences of parents of these young adults. This study will identify characteristics associated with successful transition outcomes for young adults with FXS. In addition, it will investigate mothers' mental health and functioning, and the effect of family relationships on individuals with FXS. Complete our survey if you're interested! (Eligibility screening survey housed on a secure website. Personal information will be kept secure and will go to researchers only). Transition to Adulthood with FXS Survey.
Who can participate?
Young adults ages 18 to 22 with full mutation FXS and their families, including biological mothers and fathers (biological father or other consistent father figure), may be eligible to participate. Fathers' participation is optional.
What will happen in the study?
If you qualify and decide to be in this research study, you will sign a consent form. We will visit you in your home for 2 visits over the next 5 years.
At each home visit we will administer some assessments to participants with FXS and their mothers, interview participants and their mothers, and videorecord participants and mothers making a snack and doing a puzzle game together. Assessments and measures will include the following:
For the Young Adult: Cognitive assessment; interviews with both mother and child about hopes for the future and experiences with FXS; questionnaires for both mother and young adult about young adult's development and independence; height/weight; medical records confirming Fragile X biomarkers.
Measures of Mothers' Wellness and Mental Health: Mental health interview, speech sample, questionnaires about executive function and wellness
Parenting Behaviors and Perceptions: Surveys about the family environment, attitudes and support (some to be administered to both mother and father)
Mother's Health Information: health questions, medical records confirming Fragile x biomarkers
Family Demographic Information: You will be asked to provide medical records of past blood tests confirming Fragile X biomarkers: full mutation (young adults) or either premutation or full mutation (mothers).
What are the good things that can happen from this research?
Learning more about your child and family's strengths and areas for growth and contributing to knowledge about helping young people with FXS transition to adulthood are good things that can happen from this research.
What are the bad things that could happen from this research?
Participants may experience some stress associated with researchers visiting their homes, assessments, surveys and interviews. There may be other risks that we do not know about yet.
The visit procedure will be explained at the beginning of each visit, and you will be able to ask questions and have them answered. Breaks will be provided. You may withdraw consent to any or all of the study activities or questions at any time.
Will I or my child be paid to complete this study?
Yes, $75 per visit for the young adult participants, $75 per visit for the mothers. Interested? Complete our survey! (Eligibility screening survey housed on a secure website. Personal information will be kept secure and will go to researchers only). Transition to Adulthood with FXS Survey.