Information Services

Project builds website to support Fragile X syndrome research

A new registry website has been built to support research at the Patrick Wild Centre in the College of Medicine and Veterinary Medicine.

The Patrick Wild Centre focusses on developing our understanding of the neurological basis of autism spectrum disorders, Fragile X syndrome and intellectual disabilities, as well as testing therapies.

The new website allows individuals with Fragile X syndrome or their family members to register an online profile, which will provide the Centre with a registry of people with Fragile X syndrome. The website includes features such as account management, the ability to add family members, record medical history and the delivery of surveys for research.

Prior to going live, a detailed equality impact assessment on use and independent penetration testing were carried out to ensure that participants data would be securely held.

Fragile X syndrome is a genetic condition and is the most common inherited cause of learning disabilities, affecting 1 in 4000 men and 1 in 8000 women. It is caused by mutations found on the FMR1 gene, which is found on the X chromosome.

The Centre hopes that using the website will help to develop a better understanding of the natural history of Fragile X syndrome, as well as allowing for better contact with family members of patients.