MEETING THE CHALLENGES OF CARING FOR CHILDREN AND ADULTS AFFECTED BY NEUROMUSCULAR DISORDERS IN AUSTRALIA AND NEW ZEALAND
Website: http://www.ann.org.au
The ANN represents a critical step in the care and treatment of people with neuromuscular disorders – patients will benefit considerably through access to clinical trials (via international partners such as TREAT-NMD), new gene discoveries, improved diagnosis, new therapies - to achieve coordinated excellence of care throughout Australia and New Zealand.
It is estimated that neuromuscular disorders (NMDs) affect over 20,000 adults and children in Australian and New Zealand. Neuromuscular disorder is a term attributed to a broad spectrum of disorders involving muscle, spinal cord and nerve. NMDs are characterized by progressive muscle weakness, loss of the ability to walk or perform normal daily activities, and in many cases weakness of the respiratory muscles leading to an early death. Because of their life-long and unremitting nature, neuromuscular disorders have the highest burden of disease of any National Health Priority. The collective impact on patients and their families is enormous. The per case Disability Adjusted Life Years lost is greater than for cancer and multiple sclerosis.
Given the rare nature of the disorders, and that patients are located all over Australia and throughout New Zealand, a collaborative network to address diagnosis, prevention and treatment is extremely important. The ANN involves over 380 medical, nursing and allied health professionals, scientists and representatives from advocacy groups and will ensure that the best evidence from our clinical and laboratory based research is quickly translated into best clinical practice.
Research into neuromuscular disorders has entered a new era. Advances in sequencing technologies are accelerating gene discovery and the accuracy of diagnosis and number of patients diagnosed is rapidly improving. Clinical trials for novel drugs and gene-based therapies are currently underway and hold great promise. The ANN will provide a forum to advance and disseminate information and guide best practice in diagnosis, care and treatment. The ANN will promote integrated training programs for clinicians and researchers.
Importantly, the ANN will also provide a single voice to advocate for patients and their families. The diagnosis, prevention and treatment of neuromuscular disorders will benefit greatly from a more integrated and united national approach.
The ANN is structured to address issues relating to clinical care and research effort. Each area has a Steering Committee comprising individuals with expertise in each area, as well as providing representation of all major groups active in the care and study of individuals with neuromuscular disorders across Australia and New Zealand.
Medical professionals and researchers will be able to share and access information that will accelerate improved outcomes for patients - the diagnosis, prevention and treatment of neuromuscular disorders will benefit considerably from a more integrated approach. The ANN will transform our approach to these disorders from ‘compassionate assistance’ to one of targeted treatment and prevention.
The best evidence from our clinical and laboratory based research will be quickly translated into best clinical practice.
The ANN is part of the European neuromuscular network as a partner of TREAT-NMD, and is closely affiliated with US consortia - allowing us to gain from and contribute to a global effort. For example, the recently established Australian Duchenne muscular dystrophy (DMD) registry connects Australian and New Zealand DMD patients with more than 10,000 patients worldwide across more than 30 countries. The ANN is also partnered with national patient support groups.
The network is increasingly recognised as a peak body representing neuromuscular disorders. Members of the ANN were successful in securing combined grants from the National Health and Medical Research Council and the European Union 7th Framework Programme in rare disease research. These grants, which commenced in 2013, provide $2.5million toward establishing a platform to connect patient registries and to share data on rare diseases; to improve the diagnosis of rare disorders; and to reduce inequality of care in rare diseases.
The ANN community is motivated and inspired by people living with neuromuscular disorders and families affected by neuromuscular disorders. A coordinated approach to ensure early and accurate diagnosis and access to therapies and treatments will mean that more and more people with neuromuscular disorders can live long and productive lives.
Within the next five (5) years, the ANN has committed to:
- Increasing access for patients to new therapies by expanding clinical trial centres in Australia
- Expanding registries so that patients can access trials undertaken anywhere in the world
- Promoting the expansion of multi-disciplinary clinics
- Ensuring that 90% of patients will receive an accurate diagnosis
- Promptly translating research advances into improved health outcomes
- Making best practice guidelines widely available to clinicians
- Training clinicians of the future
For further information, please visit http://www.ann.org.au
ONE VOICE
OVER 380 MEMBERS
CLINICIANS NURSES PATHOLOGISTS PHYSIOTHERAPISTS PODIATRISTS RESEARCHERS ADVOCACY GROUPS
ONE GOAL
FOR EVERY INDIVIDUAL AFFECTED BY A NEUROMUSCULAR DISORDER TO HAVE EQUAL ACCESS TO CARE AND TREATMENT
