trials

FSHD Research Projects

Advertising and promoting Facioscapulohumeral dystrophy (FSHD) Research Projects Researchers at The Royal Children’s Hospital are looking for children and adolescents aged 6-18 years who have been diagnosed with FSHD, to participate in one or both of these studies: The effect of the nutritional supplement (creatine monohydrate) on strength and muscle mass in children with FSHD [...]

By |2018-09-14T09:40:25+00:00September 14th, 2018|disorders, research, trials|0 Comments

DMD Lifetime Mobility Scale Research Study

DMD Lifetime Mobility Scale Research Study Muscular Dystrophy Australia is assisting the UC Davis Neuromuscular Research Center in USA to seek participants for an online survey about movement and daily living abilities for people with Duchenne muscular dystrophy. The Duchenne Muscular Dystrophy Life-Time Mobility Scale (DMD-LMS) is a set of questions that ask about how [...]

By |2018-08-16T18:28:09+00:00August 16th, 2018|disorders, research, trials|0 Comments

Clinical trials: Your questions answered

Clinical trials: Your questions answered Promising new treatments for many muscle and nerve conditions have been developed in recent years, promising enough in fact, for pharmaceutical companies and other funding bodies to invest in expensive clinical trials. On average only about one fifth of treatments that go to clinical trial are proven to be safe [...]

By |2018-07-02T15:14:44+00:00July 2nd, 2018|disorders, research, trials|0 Comments

Victorian Muscle Network Symposium

Victorian Muscle Network Symposium l-r - Prof Peter Currie, Prof Andrea Maier, Boris M Struk, Prof Gordon Lynch & Prof Kathryn North The Inaugural Victorian Muscle Network Symposium was held at Bio21 yesterday (19th June 2018) prior to the Annual Meeting of the International Society for Stem Cell Research (ISSCR). International speakers presenting included Prof [...]

By |2018-06-20T23:18:58+00:00June 20th, 2018|Boris M Struk, presentation, research, trials|0 Comments

MDA’s $1,000,000 Making a Difference

MDA Support of “Muscle Clinic” at RCH exceeds $1,000,000 creating world’s first dedicated multi-disciplinary Clinic Sometimes we need a reminder to realise just how far Muscular Dystrophy Australia’s support of the MD Community extends. The relationship between the MDA and RCH goes back some 26 years, when MDA was funding a dedicated MD Social Worker [...]

By |2018-06-01T03:49:05+00:00September 13th, 2017|about, information, news, research, Support Services, trials|0 Comments

Looking Back and Moving Forward

Launch of National Duchenne Muscular Dystrophy Register On Monday November 15th 2010, the Director General of Health launched the Duchenne Muscular Dystrophy (DMD) Registry. Patient registries are infrastructure that supports clinical and translational research. The DMD registry was created in response to developments in genetic technology and in particular clinical trials currently being planned, that [...]

By |2017-06-28T17:30:17+00:00June 28th, 2017|disorders, information, news, research, trials|0 Comments

FDA Approves Drug for Treatment of DMD

Chantal Coles PhD NMDRC provides a Research Update... On September 19th last year the U.S Food and Drug Administration (FDA) approved the first drug for the treatment of Duchenne Muscular Dystrophy, called EXONDYS 51™. This drug, formally known as Eteplirsen, is a gene modifying agent that bypasses a stop codon of the dystrophin, forming a [...]

By |2018-06-01T03:49:09+00:00April 3rd, 2017|information, research, trials|0 Comments

Spinal Muscular Atrophy (SMA) Research Update

Spinal Muscular Atrophy (SMA) Research update and treatment - AUSTRALIA A research update by Prof. Monique Ryan Director, Department of Neurology Group Leader, Murdoch Children's Research Institute,  Royal Children's Hospital There has been a lot of activity in the clinical trial space for SMA in the last two years. Two hospitals in Australia- the The [...]

By |2018-06-01T03:49:11+00:00November 17th, 2016|atrophies, research, trials|0 Comments