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Establishment of an Australian motor neurone disease registry

Matthew C Kiernan, Paul Talman, Robert D Henderson, Rodney Harris and on behalf of the Australian Motor Neurone Disease Registry Steering Committee
Med J Aust 2006; 184 (7): . || doi: 10.5694/j.1326-5377.2006.tb00279.x
Published online: 3 April 2006

To the Editor: Motor neurone disease (MND) is a relentlessly progressive neurodegenerative disease with a median survival of 1–3 years. It results in the death of nearly 400 Australians per year.1 The management of MND remains problematic, tending to be offered in a heterogeneous and ad-hoc fashion across Australia. This heterogeneity arises in part from a lack of understanding of the aetiology of the disease and its progression in different patients,2 the absence of established guidelines for standard care,3 and a lack of concentrated experience among medical practitioners, nursing and allied health care workers in treating patients with MND.


  • 1 Institute of Neurological Sciences, Prince of Wales Hospital, Sydney, NSW.
  • 2 Geelong Hospital, Geelong, VIC.
  • 3 Royal Brisbane Hospital, Brisbane, QLD.
  • 4 Motor Neurone Disease Asssociation of Victoria, Melbourne, VIC.


Correspondence: M.kiernan@unsw.edu.au

Acknowledgements: 

AMNDR is supported by an unrestricted research grant from sanofi–aventis. The contributions of Stephen McKechnie and Penny Williams (sanofi–aventis) in the initial development of AMNDR and ongoing studies, respectively, is gratefully acknowledged.

  • 1. Kiernan MC. Riluzole: a glimmer of hope in the treatment of motor neurone disease. Med J Aust 2005; 182: 319-320. <MJA full text>
  • 2. Bradley WG, Anderson F, Bromberg M, et al. Current management of ALS: comparison of the ALS CARE database and the AAN practice parameter. The American Academy of Neurology. Neurology 2001; 57: 500-504.
  • 3. Winhammar JM, Rowe DB, Henderson RD, Kiernan MC. Assessment of disease progression in motor neuron disease. Lancet Neurol 2005; 4: 229-238.
  • 4. Talman P, Mathers S, Mostert E, Forbes A. Evaluation of clinical patterns and rate of progression of motor neuron disease. Amyotroph Lateral Scler Other Motor Neuron Disord 2002; 3: 93.
  • 5. Talman P, Rowe D, Kiernan MC. Australian Motor Neurone Disease Registry (AMNDR). J Neurol Sci 2005; 238 Suppl 1: S214.

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