Consumer and community members were at the fore-front of Inclusion Body Myositis (IBM) research contributing to a successful grant of $1.8 million awarded.
Inclusion Body Myositis is a condition which causes muscles to become thin and weak. Symptoms usually start in middle to late life and it’s the most common muscle disease diagnoses after the age of 50. It is a rare condition though, with between 3 – 4 people out of every 100,000 people over 50 having the condition.
The team of 26 international investigators is lead by the University of Notre Dame Australia School of Medicine’s Professor Merrilee Needham and Research Manager Kelly Beer.
The $1.8 million dollars was awarded to the University of Notre Dame Australia, and research partners at the Perron Institute, Fiona Stanley Hospital, Murdoch University. The project called Optimism in IBM: A dbRCT Phase III trial of Sirolimus in patients with Inclusion Body Myositis, to slow or stabilise otherwise relentless disease progression, as measured by the IBM Functional Rating Scale (IBMFRS) aims to re-purpose a drug called Siromlimus in the treatment of IBM.
The Consumer Panel working with the research team was instrumental in the funding being awarded by providing input and feedback to the grant, improving the grant application overall and ultimately putting the research team on a pathway to success.
In total $3.5 million was awarded with the Optimism in IBM… project being one of 17 Australia-wide successful cutting-edge research projects.
Sites for the trial will be established in Perth, Adelaide, Melbourne (2), Sydney (2) and Brisbane.