THE AUSTRALIAN DUCHENNE REGISTRY

The Australian Duchenne Registry (formerly The Duchenne Registry Australia and DuchenneConnect Australia) 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.

The registry is a program of Save Our Sons Duchenne Foundation in partnership with The Murdoch Childrens Research Institute (MCRI) in Melbourne.

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THE DUCHENNE REGISTRY AUSTRALIA

The Duchenne Registry Australia (formerly DuchenneConnect Australia) 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.

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 The Duchenne Registry (USA) (formerly DuchenneConnect) – a highly successful patient registry that has been collecting data since 2007.

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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

The Australian Duchenne Registry 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 or their child / children.

IMPROVING CLINICAL CARE

The data collected by The Australian Duchenne Registry will 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.

ADDING TO GLOBAL KNOWLEDGE

Information collected in the registry will feed into the TREAT NMD international registry (with identifying information removed) which adds to the global knowledge of 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.

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

The Australian Duchenne Registry 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 or their child / children.

IMPROVING CLINICAL CARE

The data collected by The Australian Duchenne Registry will 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.

ADDING TO GLOBAL KNOWLEDGE

Information collected in the registry will feed into the TREAT NMD international registry (with identifying information removed) which adds to the global knowledge of 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.duchenneregistry.org.au

HOW DO I REGISTER?

To register, visit the registry website: www.duchenneregistry.org.au