MiNDAUS is inviting people living with Motor Neurone Disease (MND), their family carers and past family carers to join them so that they can better understand your concerns, hopes, perspectives and goals.
In an effort to improve care and the coordination of care for people with MND and their carers, leading MND Specialists and researchers partnered with organisations that provide support, care and advocacy. This group became the MiNDAUS (pronounced MindOZ) Partnership, which in 2018 received funding from the National Health and Medical Research Council, MND Charities and private donors.
Want to be involved in PLEx?
Please complete this form and email it to:
Catherine Hansen:
If you need further information, you can email Catherine as above or call 0467523911
About MiNDAUS and PLEx
We chose the name MiNDAUS for the following reasons:
• MND to announce our primary focus on Motor Neurone Disease/ Amyotrophic Lateral
Sclerosis (MND/ALS)
• The letter i reflects our inspiration to do all we can to improve the lived experience of
people with MND and their family carers, and to recognize the importance of:
o The individual with MND.
o Individuals
as family carers of people with MND.
who provide care, treatment, advice, and support to people with MND
and their families.
who strive to find a treatment or cure for MND.
involved in scientific discovery of the mechanisms of the disease and
the possible contributing causes.
o Inclusivity and welcome to all potential collaborators working towards the
same goals.
o Our investment into creating innovative systems, standards and policies which
will form the basis of a robust, flexible and evidence-based approach to MND
treatment and care into the future.
• The word MiND serves to remind us that we are all working towards the same goals
with our individual experiences and skills and that all our areas of endeavour are synergistic.
• The abbreviation AUS recognizes that we are a truly National Australian collaboration which recognises and extends those already existing
• The word US which encapsulates our emphasis on a patient-centred approach, our desire for collaboration and our recognition of the importance of diversity to achieve great things together. This is reflected in our motto.
The MiNDAUS Partnership has constructed a secure online platform which has two distinct parts: The MiNDAUS Patient Registry, and the MiNDAUS Clinical Registry. This Registry will launch soon and is the result of many years of hopes, dreams, and hard work!
The MiNDAUS Patient 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
The MiNDAUS Clinical Registry will replace the Australian Motor Neurone Disease Registry (A MND R) which has been in continuous use since 2004. The new Registry will offer linkage to the SALSA genomics project, and it will make participating in other research easier.
You are our inspiration.
Your experiences have inspired us to do what we can to improve your care and management and to help you access clinical trials to speed up the quest for a treatment or a cure.
We need you to help us so we can work on the things you find important, and the directions you would like us to take.
How will this work?
This PLEx advisory group will become an integral part of the MiNDAUS Partnership. As a
starting point, we’ll ask you to join an existing committee or working group. At the moment,
we have four active committees. Following are the names of the committees and their broad
responsibilities:
o The Executive Committee (MiNDAUSexec) which:
• Decides on the overall direction of the MiNDAUS Partnership.
• Has responsibility for the financial management, including budgets.
• Decides on the suitability of proposed new Partners.
• Actively seeks collaborative opportunities, nationally and internationally.
• Sources funding opportunities.
o The Governance Committee (MiNDAUSgov) which:
• Assesses the opportunities for working with others found by the wider
Partnership.
• Assesses the suitability of proposed new Partners.
• Delegates or forms working committees as needed.
• Assesses, grants or refuses the requests for data access on their merit and
ethical review.
o The Operations Committee (MiNDAUSops) which:
• Reports to MiNDAUSgov on operational matters.
• Refers external requests for accessing the data collected in the Registries.
• Creates new forms for added information, implements and tests.
• Ensures completeness and quality of data.
• Consults upon and costs potential new features.
o The Policy Committee (MiNDAUSpol) which:
• Identifies areas of need for policy change
• Creates ‘white paper’ or guidelines for best practice care
• Structures projects to address areas of need and applies for funding.
• Informs the Partnership of the need for different information to be collected to
inform policy direction.
• Sources funding opportunities.
As we progress, we can let you know of opportunities to take part as they arise. We’ll give
you the information on the committee or group that needs you, their aims and goals, roles
and responsibilities and you can let us know if you’re interested in joining. We’ll also
mention any skills that would be helpful, and if there is some information and training that
might help you to develop certain skills.
You don’t need to have specific education or skills to give us the benefit of your experience
and perspectives, however, there are a few principles that might guide your involvement.
These are based on the Cancer Council model (Cancer Australia):
o A willingness to use your knowledge and experience to stand for the views of others
o A willingness to act as an advocate for others
o An understanding that your involvement may not help you personally
You can take part in MiNDAUS and any committee you’ve joined for a three-year term with a
possibility to extend for a further three years. However, you may leave whenever you need
to.
Our founding partners
Professor Matthew Kiernan, Brain and Mind Centre, University of Sydney
Professor Naomi Wray, Queensland Brain Institute, University of Queensland
Assoc Professor Paul Talman, Barwon Health Victoria; Monash University, Melbourne
Professor Steve Vucic, Westmead Hospital, Sydney
Dr Susan Mathers, Calvary Health Care Bethlehem; Monash University, Melbourne
Assoc Professor Robert Henderson, Royal Brisbane and Women’s Hospital; University of
Queensland
Professor Matthew Bellgard, Queensland University of Technology
Professor Samar Aoun, Latrobe University, Victoria; Perron Institute, Western Australia.
Professor Julian Savulescu, University of Oxford; Murdoch Children’s Research Institute;
University of Melbourne
Professor Dominic Rowe, Macquarie University; Macquarie University Hospital
Carol Birks, MND Association of Australia
Gethin Thomas, MND Research Australia
MND Research Australia
Professor Ian Blair, Macquarie University, NSW
Geoff Thomas OAM, Thomas MND Research Group, South Australia
Catherine Hansen, Thomas MND Research Group, South Australia
Dr Anne Hogden, University of Tasmania
Professor Merrilee Needham, Fiona Stanley Hospital, Murdoch University; Notre Dame
University Western Australia
Assoc Professor David Schultz, Flinders Medical Centre, South Australia
Dr Tina Soulis, Neuroscience Trials Australia
Sr Margie Zoing, Brain and Mind Centre, University of Sydney
Jane Milne, MND and Me Foundation, Queensland
Bec Sheean, Fight MND