Research Study: Fragile X Syndrome (FXS)

My name is Caroline Ruth. I am an Educational Psychologist working as part of the Carlow/Kilkenny Developmental and ASD Psychology Team. I am currently completing a Professional Doctorate in Educational Psychology in UCD and am conducting a research study on the support needs of families with a child with a diagnosis of Fragile X Syndrome (FXS) in Ireland. You are invited to complete a survey as part of my research which is being carried out under the supervision of Dr. Joyce Senior, School of Education, UCD. Before you provide consent, it is important that you understand why the research is being conducted and what it will involve.

Purpose of the Study:
The main focus of my research is on the identification of informational and support needs of families in Ireland who have a child or children with FXS. The study aims to obtain a representative profile of needs and predictors of those needs for families of children with FXS. It is intended that research findings will be used to enhance the limited awareness and information on FXS and to inform Irish policy and practice, especially the need to tailor services to best meet families’ needs.

Full ethical permission has been granted for this study. If you agree to participate in this research, you will be invited to tick the 'I agree' box below. The survey will take approximately fifteen minutes to complete. Participation in this study is voluntary and you will be free to withdraw up until the time you press the ‘submit’ button. After that it will not be possible to withdraw your answers as the survey is anonymous. At the end of the survey you will be asked if you would like to participate in an interview as part of this research study. Participation is optional and anonymity is guaranteed.

The researcher will ensure that no participant, person or child will be identifiable from the data and all participants will be assured full anonymity.
For further details please contact Caroline Ruth (

Please read the following statements before ticking the 'I agree' box to continue:

- I understand what the study is about and what the findings may be used for.
- I know that participation is voluntary and that I can withdraw from the survey up until I press the ‘submit’ button.
- I know that my survey details will be stored in a secure location.
- I am over 18 years of age.
- I agree to take part in the above study.
Please tick 'I agree' before starting the survey. *
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