An Alliant International University Clinical Psychology Doctoral Candidate is conducting a research study to learn about the cognitive profile of children with a full mutation of Fragile X.
About the Research Study
Who can participate?
Males and transgender females between the ages of 8-12 years of age who are English Language dominant may be eligible to participate.
What will happen in the study?
f the individual qualifies and decides to be in this research study, the Doctoral Candidate will meet via Skype for Business to complete the cognitive testing with your child online.
The following is a list of some of the study procedures that will happen during the study:
- Parent completion of a questionnaire
- Parent presentation of child’s documentation of a full mutation of Fragile X Syndrome
- Child participant in cognitive testing
What are the good things that can happen from this research?
Participants and families within the Fragile X community will be participants in developing a standardized cognitive profile of children with Fragile X to assist in the development of interventions and supports for children. They will be entered to win a $50.00 gift card, and they will not have to travel for this study. The study is conducted via Skype for Business (video conferencing) and will not be recorded.
What are the bad things that can happen from this research?
The parent may experience minimal psychological distress from filling out the questionnaire. As well, the youth may experience minimal psychological distress from completing the cognitive measure. Breaks will be offered after subtests and at the youth’s request to minimize/reduce fatigue. In the case that they may experience any adverse responses to any of the material in the study, they may contact the investigator to discuss these responses and work with the investigator to identify an appropriate referral for psychological treatment, which would be undertaken at the family’s own expense. Fatigue will be addressed through active attempts by the researcher to provide breaks throughout the assessment, between subtests or at the youth’s request. There may also be other risks that we do not know about yet.
Will you/your child be paid to be in this research study?
Participants receive entry to win a $50 VISA gift card.
Christina Aguirre-Kolb, MS, under the supervision of James Garbanati, PhD, Alliant International University, Los Angeles.
Our Most Recent Opportunities
Parents or caregivers of individuals with Fragile X syndrome who has received services via telehealth during the COVID-19 pandemic may be eligible to participate.
Individuals with FXS who are 18 years or older and able to talk fluently about own experiences, and their caregivers and providers may be eligible to participate. Eligible providers include teachers, psychologists, social workers, and physicians.
NFXF has partnered with an advisory committee of international fragile X professionals to create an international fragile X premutation research registry. Find out how to participate.
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