The Society is currently working with five research teams in the UK and we should be pleased to hear from families who are interested in taking part in these studies.

Study 1: What do fragile X families think it is important for a carrier of fragile X to know in order to make an informed decision about prenatal testing?

Study 2: Challenging Behaviour in fragile X syndrome

Study 3: Longitudinal study of attention in toddlers and children

If you would like to volunteer to take part in studies that the Fragile X Society is supporting please contact Sally Hicks, Research Officer, by telephoning 01371 875100 or email info@fragilex.org.uk or go to Contact Us

Study 1: What do fragile X families think it is important for a carrier of fragile X to know in order to make an informed decision about prenatal testing?

Researcher : Hilary L Grant, Institute of Health Sciences and Public Health Research, University of Leeds

Study Aims

To develop information about fragile X that will help carriers who may have no knowledge or experience of the syndrome

To understand the possible day-to-day experience of life with fragile X in order to assist carriers in their decision-making about whether or not to accept prenatal testing.

Research Activities

Stage 1 - Hilary visited people who have fragile X and a group of the Society’s family members who helped her to compile a list of statements about fragile X which would be important for a carrier to be told about fragile X.

Stage 2 - Hilary is visiting more parents and carriers of fragile X to find out what they think of the list of suggested statements and to sort the statements into what, in their opinion, is their order of importance.

Latest News

Hilary is now in the final stage of this study - we await her report with interest.

Study 2: Challenging Behaviour in fragile X syndrome

Researcher : Paul Langthorne, The Tizard Centre, University of Kent, Canterbury

Study Aims

To improve the way in which challenging behaviours associated with fragile X are assessed and treated.

Research Activities

Study 1 - Paul iconducted telephone-based interviews with parents of fifty children aged between 5 and 14 years with fragile X syndrome.

Study 2 - Paul  conduct an in-depth analysis of challenging behaviour in ten of the children, whose parents participated in study 1.

This study is now finished, and we are awaiting the results with interest.

Study 3: Longitudinal study of attention in toddlers and children

Researchers : Dr Gaia Scerif, University of Nottingham; Professor Karmiloff-Smith, University College London; Dr Kim Cornish, McGill University

Study Aims

To investigate the development of attentional control in fragile X children across vision and audition to uncover the strengths and weaknesses specific to either modality, those that are common to both, and those that result from cross-modal integration.

The study began in June 2007. The study is in the second phase now, with further meetings being arranged with the families.

If you would like to volunteer to take part in studies that the Fragile X Society is supporting please contact Sally Hicks, Research Officer, by telephoning 01371 875100 or email info@fragilex.org.uk or go to Contact Us

See also

UK Research Reports 

Society's Research Policy