The Australian Duchenne Registry forms part of the Australian Neuromuscular Disease Registry housed at the Murdoch Children’s Research Institute in Melbourne.
The Registry’s purpose is to establish a database of all patients, children and adults in Australia diagnosed with neuromuscular disease, including Duchenne and Becker muscular dystrophy.
Through this database, we hope to form a network of patients, clinicians, researchers, and industry to further research into neuromuscular diseases, ease the process in finding and selecting participants for clinical trials, and create an additional support for patients and their families.
There will soon be a stand-alone webpage for the Registry. Once this webpage is ready, there will be a link on the Save Our Sons website to the Registry so patients can access and enrol for the Registry.
As you are aware, a key aim of Save Our Sons is to bring more clinical trials to Australia so that those with Duchenne and Becker muscular dystrophy can gain early access to promising therapies. Patient registries assist pharmaceutical companies in planning clinical trials and speed recruitment to these trials once they begin. This will make Australia a more attractive place to conduct Duchenne and Becker clinical trials.
The data collected by the Registry will also help to improve care standards in Australia. We understand that inequalities exist in accessing ‘gold standard’ care for those living with Duchenne and Becker muscular dystrophy — the Registry will help to identify gaps so that steps can be taken to fill them, with innovative programs such as our Nurses Program.
Please support the Registry by registering once the new webpage for the Registry is ready. If you are already registered through the Australian Duchenne Registry thank you. We will keep you closely informed. In the interim if you have any queries please email: firstname.lastname@example.org