DuchenneConnect Australia patient registry
DuchenneConnect Australia is a patient registry that collects information about Australians with Duchenne and Becker muscular dystrophy and carriers of these conditions, with the aim of opening up opportunities for participation in research and clinical trials.
To register with DuchenneConnect Australia, individuals with Duchenne or their caregivers enter their medical information by completing surveys online. This information is stored in a secure database and pharmaceutical companies, academic researchers, policy makers and regulators can apply for access to the data (with identifying information removed).
The registry is a program of Save Our Sons Duchenne Foundation and was developed through a collaboration with Parent Project Muscular Dystrophy (PPMD). PPMD is the US Duchenne patient organisation that owns DuchenneConnect – a highly successful patient registry that has been collecting data since 2007.
Read our press release 5th June 2017.
Bringing more clinical trials to Australia
A key aim of Save Our Sons Duchenne Foundation is to bring more clinical trials to Australia so that those with Duchenne 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 clinical trials.
An information hub
DuchenneConnect Australia is an information hub for families who register – they gain access to the latest clinical trial news and information on research specifically applicable to them. In addition, they can store their medical history securely in their account so they can access it anywhere, anytime, which is particularly beneficial in an emergency situation.
Improving clinical care
The data collected by DuchenneConnect Australia will help to improve care standards in Australia. We understand that inequalities exist in access to ‘gold standard’ care for Duchenne - the registry will help to identify gaps so that steps can be taken to fill them.
Adding to global knowledge
Information collected in the registry will feed into international registries (with identifying information removed) to add to knowledge about how Duchenne progresses and the factors that influence symptoms. This knowledge is vital to determine how best to manage Duchenne and inform the design of clinical trials.
How do I register?
To register, visit the registry website: www.duchenneconnectaustralia.org.au
Here you can create an account by entering a unique username and password, read a page about understanding your participation and then give consent to take part. You can then start answering questions online about your health and medical history.
If you’ve already registered with DuchenneConnect in the USA please contact us and we will arrange for your account to be moved over to DuchnneConnect Australia.
Contact the DuchenneConnect Australia Coordinators: