The Australian Motor Neurone Disease Registry is a de-identified disease based registry that facilitates the collection and storage of Motor Neurone Disease data. It includes information such as patient demographics, site of onset of disease, diagnosis date, treatment type, changes in disease, complications related to disease progression and the impact of new treatments and interventions for Motor Neurone Disease.
Each patient’s information is collected by their clinician and research nurse. The data is then de-identified and provided to the MND Registry database where it is stored securely.
The data that is gathered can be used to help further the understanding of Motor Neurone Disease 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.
The main registry goals are:
- To improve patient care
- Continuously evaluate patient management
- Improve the understanding of MND/ALS
- Form significant scientific research collaborations