What research is being done?

There is a strong, global scientific and medical community pursuing research into all forms of Myositis. The Global Conference on Myositis, GCOM is held every 2 years (subject to Covid). Doctors, researchers and patient support groups from many countries, including Australia, present papers and scientific posters about their work. The most recent GCOM meeting was held in Prague in June 2022. Over 450 people attended in person or online, from 33 countries. The conference sessions illustrated the researchers’ passion and desire to unravel our complex disease and help patients. 189 posters of Myositis research being undertaken around the world, were also presented. Our Association contributed a poster of our key activities including voluntary consumer efforts to support research.

In Australia we’re fortunate to have numerous doctors, scientists, students and allied health professionals engaged in world class Myositis research in most of our major cities. The research is advancing knowledge about Myositis. It’s also testing potential treatments, considering ways to reduce diagnostic delays and improve diagnostic methods. There is also research on ways to help manage our lives safely and cope with living with a chronic disease. Research updates are reported in our Newsletters. Also check out the videos on our Members only Resources page for seminars with doctors discussing the latest research.

Patients in Australia are actively participating in research activities. Those living with Myositis can help by:
– volunteering to be a clinical trial candidate (subject to qualifying);
– completing surveys or interviews on relevant topics when requested;
– consider joining the consumer panel to review research activities;
– researching and adding Myositis suitable mobility aids to our catalogue of gadgets;
– posting items about useful assistive devices and tips for living on our Facebook page.

More information on Australian-based treatment studies can be found on the australianclinicaltrials.gov.au website.

The details for a number of International Myositis treatment studies can be found on the clinicaltrials.gov website.

A Phase 3 Study of Sirolimus in IBM www.clinicaltrials.gov/ct2/show/NCT04789070

Australian Myositis Studies – Currently Recruiting Participants

The following Myositis research studies are currently recruiting or will soon be recruiting participants in Australia:

A Phase 1 Study of ABC008 in Adult Patients With Inclusion Body Myositis (IBM)

A Study to Evaluate the Efficacy, Safety, and Pharmacokinetics of IgPro20 in Adults With Dermatomyositis (DM)

A Phase 3 Study of Sirolimus in IBM

Stay up to date

One of the best ways to stay up to date with the latest research is to become a member . We regularly provide updates on Myositis research in our bi-monthly member newsletters.