Prader-Willi Syndrome trial

La Trobe University has been awarded $869,140 in federal funding to run the largest ever trial on a rare genetic condition.

Federal Health Minister Greg Hunt has allocated funding for the four-year trial under the Medical Research Future Fund Rare Cancers, Rare Diseases and Unmet Need scheme.

La Trobe physiotherapy Professor Nora Shields will lead a team of Australian researchers who will investigate the potential benefits of community-based exercise for young people with Prader-Willi Syndrome (PWS).

PWS is a rare, serious, costly, lifelong health condition. The average life expectancy for people with PWS is 33 years.

Professor Shields said obesity is the major cause of early death in PWS due to hyperphagia – an uncontrollable urge to eat – that can lead to extreme obesity.

“People with PWS have smaller and weaker muscles which makes it difficult for them to do daily activities, to exercise and to control their weight.” Professor Shields said.

“Exercise could help people with PWS build up their muscles, burn off extra calories and encourage them to become more active.”

The research team will recruit 60 young people with PWS and randomly allocate them to two different types of exercise groups.

Participants will be assessed at the start of the trial, after six months and again at 12 months and results compared.

“The cost and burden on families and the healthcare system of PWS is enormous and those with the condition face social isolation and can have a poor quality of life,” Professor Shields said.

“We not only want to improve health outcomes for people with PWS, but we also hope through this trial to provide high-quality evidence to underpin National Disability Insurance Scheme funding for people with PWS.”

Professor Shields will collaborate with La Trobe colleagues Professor Nicholas Taylor, Director of the Living with Disability Research Centre, Professor Christine Bigby, and Associate Professor Luke Prendergast, as well as researchers from the University of Melbourne, the University of Sydney, and Deakin University.

Several hospitals around Australia will also take part in the trial, including Melbourne’s Royal Children’s Hospital.

Media Contact – Anastasia Salamastrakis 0428 195 464