Australian Motor Neurone Disease Registry

www.amndr.org

The Registry is an initiative of a group of neurologists, scientists and MNDAA to record basic information about the diagnosis, management and progression of MND in Australia. Funded by an unrestricted educational grant from Aventis Pharma, the Registry is a unique attempt to capture information about every person diagnosed with MND in Australia.

The Registry will collect and analyse MND patient data, including demographics, site of onset, diagnosis, treatment type, change in functional capacity, complications, impact of new treatments and new interventions. The goal of the Registry is to improve patient care through continuous evaluation of patient management and associated outcomes. This will provide Australian neurologists with an opportunity to identify treatment gaps and compare management strategies with associated outcomes at a national level. This will, in turn, generate novel hypotheses for further research.

To be successful, the Registry needs people with MND to participate. Without people diagnosed with MND, the Registry will simply be a collection of interesting information. It needs every person with MND to tell their neurologist that they want to be a part of the Registry.

Participation may be the most important contribution a person with MND can make to Research. Recruitment of people living with MND is expected to begin in late August, following ethical approval from hospitals and clinical centres.

Each MND Association has a question and answer leaflet on the Registry. Further information is available at www.amndr.org or from the MND Association.