An Australian Study of families who carry the fragile X gene

The Australian Research Council (ARC) has funded a 3 year study to help families, health professionals and educators understand how being a carrier of fragile X impacts on Australian families.

For many years, individuals who carried the fragile X gene (carriers) were assumed to be completely unaffected by any challenges facing individuals who had fragile X syndrome. In recent years a number of overseas studies of families suggest that the carriers may have subtle profiles of strengths and challenges that include very good visual and verbal skills but difficulties in decision making and short term memory skills. However, these studies were only conducted in male carriers and we do not know whether women who carry the fragile X gene display a similar profile. Professor Kim Cornish, Head of School of Psychology and Psychiatry, Monash University, is leading this new Australian study.

We also do not know if there exists different profiles in women who carry the fragile X gene and have a child/children with fragile X syndrome compared to women who carry the gene but do not have a child with fragile X syndrome. For the first time, in one Australian research study, we will be able to identify commonalities in profiles between men and women who carry the fragile X gene and also highlight important gender differences.

• In Australia we estimate that hundreds of families will have a member who is a carrier of fragile X.
• It is vital that we gather as much knowledge as possible about being a fragile X carrier across the lifespan so we can inform all families about what to expect and how best to intervene.
• Understanding how motor skills, language skills, decision making skills and your well-being changes with age will provide invaluable information that will help future generations.

The Step Ahead project is based at Monash University in Melbourne and they are looking for carriers of fragile X syndrome to participate in their study. Travel costs and additional costs incurred because of your participation will be covered.

If you are interested in the Step Ahead Project please contact Claudine Kraan at the School of Psychology and Psychiatry at Monash University on 03 9902 4162 or claudine.kraan@monash.edu. Alternatively, you may contact Dr Darren Hocking at the School of Psychology and Psychiatry at Monash University on 03 9902 0467 or darren.hocking@monash.edu.