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Transition to Adulthood in Children with Fragile X and Their Families

Thank you for your interest in the Transition to Adulthood in Children with Fragile X Study at the University of Kansas! Please fill out this form, and a member of the research team will contact you if you are eligible to participate.

This survey link goes to a secure website. Personal information entered will be kept secure and will go to researchers only.

If you have questions, please email us at fragilex@ku.edu.

Study: Transitioning to Adulthood with Fragile X syndrome

University of Kansas' Life Span Institute is conducting research to learn about the transition to adulthood for individuals 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.

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 can 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.

Who will see this information?

Your responses to the following questions will be kept confidential. Only current members of the research team will have access to the information provided in this form.

Who can I contact with questions?

You can contact the Fragile X Lab by phone at (785) 864-1438 or by email at fragilex@ku.edu

I consent to be contacted by researchers about possible participation in this study.

Yes, I consent to be contacted.

No, I do not consent to be contacted.

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What is your full name?

* must provide value

What is your child's full name?

* must provide value

What is your relationship to this child?

Biological mother

Biological father

Adoptive mother

Adoptive father

Foster parent

Other

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What is YOUR date of birth?

M-D-Y

Please answer the following question only if you are the child's biological mother. What is your FMR1 gene mutation status?

Premutation (55 to 200 CGG repeats)

Gray Zone (45 to 54 CGG repeats)

Full Mutation (>200 CGG repeats)

No mutation (< 44 CGG repeats)

I don't know

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What is YOUR CHILD's date of birth?

* must provide value

M-D-Y

Does your child have Fragile X syndrome?

* must provide value

Yes

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What is your child's sex assigned at birth? Please check all that apply. Only current research team members will have access to this information, and it will be kept private and secure. This information is being obtained for genetic reasons in this study.

Male

Female

Intersex

Other

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What is your child's gender identity? (may be left blank if you prefer not to answer)

What are your child's pronouns? (e.g., she/her, they/them, he/him, etc.)

What is your child's race? (select all that apply)

White

Black or African American

Asian

Native Hawaiian or Other Pacific Islander

American Indian or Alaska Native

Other

What is your child's ethnicity?

Non-Hispanic, Non-Latinx

Hispanic, Latinx

Other

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What is your email address?

What is your phone number?

* must provide value

Is it okay to leave a voicemail message at this phone number?

Yes

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Does that phone number receive and send text messages?

Yes

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Is it okay to leave a text message at this phone number?

Yes

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Please select your preferred method(s) of contact.

* must provide value

Call

Text

You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.