What is MiNDAUS?
MiNDAUS (pronounced MindOZ) is an ambitious broad national partnership, funded by donations and the Australian Government National Health and Medical Research Council (NHMRC) in 2018, and focuses on people with MND and their primary carers. It enables healthcare workers, clinicians and researchers to work together to achieve the best outcomes and develop evidence-based health policies for people affected by MND. Read more about our partnership here
The MiNDAUS Partnership has constructed a secure online resource- The MiNDAUS Registry, which launched in pilot phase in October 2021. The Registry has now been made available nationally.
We’ve created a video which explains more about the benefits of taking part.
You can choose to use the Registry for your own purposes only, or you can choose to have your clinical information collected and linked to your personal information.
This is important because collecting information from many people will allow expert Clinicians to better understand the different forms MND takes and what might cause the differences. Analysing the data collected will also help us to understand how safe and effective different treatments and medicines might be. Participating will also make it easier for you to take part in other research projects, such as clinical trials.
The MiNDAUS Registry
The Patient side of the MiNDAUS Registry will allow you the choice of recording information about yourself and your specific needs on a platform which makes it easy to complete, easy to update and easy to share with people that you choose. Taking part in the Patient Registry is simply a matter of registering yourself and entering the information you think is important. You will be given the opportunity to link your information on the Patient Registry to the Clinical Registry which is completely up to you.
Registering yourself will also enable you to agree to participate in the collection of your clinical information if you wish to.
Patients have the ability to nominate their carer to add and update their information. The carer will receive an email with a link which enables them to register. As time goes on, we will add to the carer functionality.
The MiNDAUS Clinical Registry
The clinical side of the MiNDAUS Registry will collect relevant patient data which will allow MND Clinicians and researchers to better understand the different forms MND takes and what might cause these differences. Clinical data relevant to MND is collected and entered by researchers during routine clinical visits. The Registry will also help us understand how safe and effective different treatments and medicines might be. Any personal information will only be collected and stored with the consent of each participant, and the information collected will only be used according to State, Federal and International laws and guidelines governing privacy.
The MiNDAUS Registry will also provide access to research for registered participants which includes the possibility of clinical trials. This approach is designed to improve care and treatment of MND and ensure the best outcomes possible for people living with MND. Access to data by third parties will require approval from the MiNDAUS Governance Committee and separate institutional ethics approval specific to the research being proposed.
You will be invited to take part in the MiNDAUS Registry at your next Specialist MND Clinic visit, if they are taking part. If you see an MND Specialist outside one of our participating sites, you can still contribute your clinical data if you wish to. Once you are logged in, go to the section My External Specialist Visits and find out more.
If you have any questions about your involvement or any feedback for us, please don’t hesitate to contact the Data Operations Manager, MiNDAUS Registries.