Motor Neurone Disease: Patient centred care for a progressive neurological disease— evidence driving policy.

The present Partnership application aims to develop a national model for patient-centred care that integrates healthcare models to drive better outcomes, while also leading to the better coordination of research that aims to better understand disease progression and develop more effective therapy. The Australian Motor Neurone Disease Registry (AMNDR) is a de-identified disease based registry that facilitates the collection and storage of MND data. The data that is gathered can be used to help further the understanding of MND and to enable significant scientific research collaborations with organisations and individuals. With the major objective of the registry being; to improve patient care through observing patient management and evaluating outcomes. To make the registry a true representation of all Australians with MND they require greater enrolment of the MND community. Whilst the registry collects information on patient clinical information and management it does not collect information on the patients experience of health services or patient/carer health outcomes. They aim to attract collaborations with other researchers to aiming to improve MND care.