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Research Study

Parents of children with Fragile X Syndrome in Ireland – your views are sought!

Please read the below information regarding research that you may wish to participate in;

Caroline Ruth is an educational psychologist who works as part of a multi-disciplinary Developmental and Autism Team for HSE South, and is currently engaged in doctoral research in UCD. Her research is focusing on the support needs of families with a child/children with Fragile X Syndrome (FXS) in Ireland. As part of her research, she is seeking insights from parents of children with FXS through a survey and/or interview. There is a particular focus on the voice of parents and their lived experience of FXS within this study. It is intended that research findings will be used to inform policy and practice within an Irish context, and in particular enhance understanding about this complex disorder. Full ethical permission has been granted for this study.

Participation is voluntary and anyone is free to withdraw at any stage, without need for reason. The researcher will ensure that no parent, child, service or stakeholder will be identifiable from the data.

The survey will take approximately fifteen minutes to complete and can be accessed at the following link:

For any further details please contact Caroline Ruth at