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World-first Huntington's study

Tuesday, 01 May 2012

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ECU researchers are leading a world-first study which could change the way Huntington’s disease is treated.  

Participants in the 18-month study, which is in its final testing stage, are undergoing a regular program of brain-training exercises, gym training and social stimulation. Testing at the halfway stage showed significant improvements including:

  • Participants deteriorating 50 per cent less than the control group when measured by the Unified Huntington’s disease rating scale;
  • An increase in overall body mass (according to the Body Mass Index), compared to untreated controls, who lost body mass;
  • An increase in muscle mass, compared to muscle loss for untreated controls; and
  • Increase in overall physical and mental health

Participants attended regular sessions at leisure centres across WA, including the gyms at ECU’s Joondalup and Mount Lawley Campuses.  They were also given activities to complete at home, with Exercise Physiologists and Occupational Therapists visiting their houses regularly to implement exercise programs at home.

There is currently no known cure for Huntington’s disease. The disease progresses slowly over a 10 to 25 year period, resulting in physical, mental and emotional changes, which can include a loss of muscle coordination and cognitive processes.

The study is run by ECU project leader Associate Professor Mel Ziman and neuroscientist and project manager Dr Jennifer Thompson. They are hopeful that the results will have an impact on treatment programs worldwide.

“Huntington’s is debilitating, severely affecting the lives of patients, their families and friends,” Associate Professor Ziman said.

“Results at the nine-month stage were truly remarkable and we hope that by the end of the 18-month program we will have enough evidence to support the implementation of a similar treatment program nationally and eventually globally.”  

Ed Farrar is one participant in the study. With a family history of Huntington’s disease, Ed knows firsthand the effect it can have on those who are diagnosed.

“My mum and sister were both diagnosed with Huntington’s,” Mr Farrar said.

“My sister chose to ignore the symptoms and do nothing about her condition. She now requires constant care and can’t look after herself. I am of the opinion that you can’t change the gene, but you need to give your body the best chance to fight, and this is what the ECU program has done for me.”

Mr Farrar has shown significant improvement throughout the program, experiencing an increase in depth perception, balance and cognitive skills.

“The program has had a significant impact on my overall wellbeing. I am no longer suffering from falls, am more confident and have a greater quality of life,” he said.

“I’m living proof that the program really does help make a difference. You can’t help the cards you’ve been dealt but you can make steps to improve from where you are – and this program has helped me do just that.”

The final testing day for the program will take place on Saturday, 5 May from 11.00am at the Joondalup Campus, with results from the 18-month testing program available shortly afterwards.

The research has been made possible by funding provided by Lotterywest, through the community grant program.

For background on the study, visit the ECU website.

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