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 MND.
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 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.
How to participate
- The Australian MND Clinics participating in the collection of information are listed here.
- There are no extra tests, procedures or treatments involved
- You will be assigned a unique identification number, this keeps your information anonymous
- Your de-identified information will be stored securely with all MND registry data.
- All patient information is combined for analysis to help provide useful data for improving patient care.
Reasons to participate
- You will receive the same high level of care
- You can actively contribute to research by enabling researchers to learn more about the disease
- You can make a difference
Information about participating
- Your neurologist will complete all the details needed to participate
- You can withdraw from the MND Registry at any time or decline to participate
- Choosing not to participate will not affect the quality of care you receive
- Your neurologist will be the only person to know ‘who you are’
- Information about you is collected for the registry
- At your first visit
- At approximately 3, 6 and 12 months after your first visit, then approximately every 6 months.