Dr Don Bailey (middle) with Australian Fragile X families

The National Fragile X Survey will continue until September 2009 and is the first national study of families in Australia and New Zealand who have a child/children with Fragile X. Dr. Don Bailey, an expert in Fragile X research at R.T.I (Research Triangle Institute) International , is directing the study. The confidential results from the survey will then be shared with Fragile X organisations, researchers and legislators to help amend policy and improve practice. This study is extensive and will take a substantial amount of time, however the results are imperative in forming a national picture of the needs of families with a child/children who has Fragile X. Participation in the study is voluntary and you have the right to stop at any time. In addition, you may choose to skip any questions which you don’t want to answer. If you are unable to access the internet to complete this online survey a confidential phone interview can be arranged through contacting Jocelyn on 1300 394 636. The online survey can be accessed by clicking on the following link:

https://fragilex.rti.org

If you have any questions regarding your rights as a survey participant or any other issues please contact Jocelyn on 1300 394 636.