Myositis Research Update a success

The Myositis Discovery Programme team, led by Professor Merrilee Needham, was delighted to welcome over 100 attendees (in-person and online) to the 3rd annual Myositis Research Update Day at Manning Community Hall. There were presentations from researchers, clinicians and allied health professionals.

As well as updates on the clinical and laboratory arms of the discovery programme, two projects led by University of Notre Dame medical students, Melanie Cusso and Ethan Williams were outlined and there were presentations on two upcoming consumer-led projects looking at patient and carer priorities in relation to inclusion body myositis (IBM) and food, mood and fatigue.  

Through collaboration with Myositis Association members, the day also featured community service stalls. 

The Myositis Discovery Programme, supported by a generous bequest from Marcia Sheath via the Perron Institute, is partnering with patients to drive discovery and improvements in care for people with myositis and their families. 

Programme lead and head of Myositis Research at the Perron Institute and CMMIT, Murdoch University, Professor Needham, spoke about the day’s importance.  

“Our annual patient update day is an excellent opportunity to keep patients informed about our research progress, including our work with samples and data they may have donated.   

We combine research presentations with education and information to help patients understand and better manage their conditions. The collaboration with the Myositis Association is critical to ensure that patients have access to the best support and care possible while we try to crack these rare diseases.”  

Recordings of the presentations will be available to patients and Myositis Association members.  

In other myositis news, the Myositis Research team is preparing for the start of the Perron Institute-sponsored international Phase 3 clinical trial of Sirolimus in inclusion body myositis. The team received a $1.8m grant from the Federal Government in 2020 for this Perron Institute led trial and recruitment is expected to begin soon.  

The trial includes seven sites across Australia and seven internationally. It aims to provide conclusive data on the effectiveness of a re-purposed drug, Sirolimus, in slowing or stabilising IBM progression. There are currently no approved treatments available for this rare neuromuscular disease.  

Further information on the trial is available here 

For information on any of the Myositis Discovery Programme projects, email Kelly Beer, Clinical Research Manager.