The Australian Neuromuscular Disease Registry (ANMDR)
If you are a person or family living with Duchenne or an associated dystrophinopathie (this means if you or your child / children have Duchenne or Becker or are a carrier of these conditions), then you are eligible to enrol in the Australian Neuromuscular Disease Registry (ANMDR) based at the Murdoch Children's Research Institute (MCRI). Your data is essential to build a comprehensive database, to inform decision makers, clinicians, researchers, and industry nationally and internationally to work in collaboration to discover new therapies, inform the decision makers on access to new therapies and the care, quality of life needs of our community, and advance scientific knowledge. Join today.
About the Registry
The Australian Neuromuscular Disease Registry (ANMDR) is an Australia-wide registry of people diagnosed with Duchenne and associated dystrophinopathies and other neuromuscular diseases. It collects important medical information from patients who are adults and children across the Australia to improve the understanding of neuromuscular diseases and accelerate the development of new therapies.
About the Registry
A registry is a collection of information about individuals with a specific diagnosis or condition.
The aim of the ANMDR is to collect detailed information about individuals in Australia with neuromuscular conditions such as:
Duchenne and associated dystrophinopathies,
Spinal Muscular Atrophy (SMA)
Facioscapulohumeral Muscular Dystrophy (FSHD)
Myotonic Dystrophy (DM)
The registry aims to collect data from both adults and children. Anonymised data from this registry will also be shared with a global neuromuscular registry organisation, the TREAT-NMD Neuromuscular Network.
What is the Benefit of the Registry?
By having a database of patients with neuromuscular diseases, clinicians and researchers are better able to understand the underlying natural history of these conditions and how best to monitor and treat them.
More immediately, recruitment into clinical trials, and finding clinics and services, will become more easily accessible through the registry hub. Details and information about clinical trials will be readily available and having a registered neuromuscular hub can increase our ability to attract more clinical trials to Australia.
By having a unified national neuromuscular disease registry, we will have a platform for patients, clinicians, researchers, and industry to work together to discover new therapies and advance scientific knowledge for these rare diseases.
Who is running the registry?
This registry is being run through the Murdoch Children’s Research Institute (MCRI) in Melbourne by the ANMDR team. This team includes medical professionals, neuromuscular research staff, and support group representatives. The Registry is supported by neuromuscular clinicians across Australia and is part of the international collaboration of registries at TREAT-NMD based in the UK.
Sign up to the registry
Help us find a cure for Duchenne
Our role to create a better future for those living with Duchenne.
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