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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): 367-368.
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.

  • Matthew C Kiernan1
  • Paul Talman2
  • Robert D Henderson3
  • Rodney Harris4
  • on behalf of the Australian Motor Neurone Disease Registry Steering Committee

  • 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.

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