University of Kansas’ Life Span Institute is conducting research to learn about the transition to adulthood for individuals with Fragile X syndrome, 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 Fragile X Syndrome. In addition, it will investigate mothers’ mental health and functioning, and the effect of family relationships on individuals with Fragile X.

Interested? Learn more and sign up to be contacted below.

About the Study

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.

What will happen in the study?

If the individual qualifies and decides to be in this research study, we will visit them in their home for 2 visits over the next 5 years.

At each home visit we will administer some assessments to participants with FXS and their parents, 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 Fragile X; questionnaires for both mother and young adult about young adult’s development and independence; height/weight; optional blood draw for 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, optional blood draw for Fragile X biomarkers
  • Family Demographic Information

If you and/or your child have not had a recent blood analysis, we will ask you to collect a blood sample at your next physician’s visit and we will provide means to send this collection to Dr. Berry-Kravis at Rush University. The blood draw is optional.

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 Fragile X transition to adulthood are good things that can happen from this research. Optional blood testing will allow us to investigate biomarkers that may predict developmental outcomes for both young adults and mothers.

What are the bad things that can happen from this research?

Participants may experience some stress associated with researchers visiting their homes, assessments, surveys and interviews. If participants opt to have their blood drawn by their physician, there may be pain and/or discomfort from the blood testing.

The visit procedure will be explained at the beginning of each visit, and participants will be able to ask questions and have them answered. Breaks will be provided, and participants will be compensated with money for their time. Participants may withdraw consent to any or all of the study activities or questions at any time. Optional blood draws will be performed at routine doctor visits.

There may be other risks that we do not know about yet.

Will I or my child be paid to complete this study?

Participants receive $75 per visit for the young adult participants, $75 per visit for the parent participants, $50 each participant for blood tests.

Interested in Participating?

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