In Australia

The MND Research Institute of Australia

Research into the cause, care, control and cure of MND is being conducted at many universities and research centres throughout Australia. Clinical and social research to ensure the best possible care and support for people living with MND is also increasingly being conducted in Australia. The State MND associations direct the donations they receive for MND research to the MND Research Institute of Australia (MNDRIA), the research arm of MND Australia, which administers and allocates grants in Australia.  

A list of all grants awarded, including named grants, and grant summaries can be seen here

The experiences and needs of children and adolescents who have a parent with motor neurone disease

You and your children or grandchildren aged between 11-16 years of age are invited to take part in this study

Purpose of study:

Motor Neurone Disease (MND) has a major impact on the whole family. This study aims to explore the experiences and identify support needs of children and adolescents between 11-16 years of age who have a parent or grandparent living with MND. Information will help to develop supports for such children and adolescents.

Study procedures:

If you are interested you will see a researcher who will explain the study and, if you and your child(ren)/grandchild(ren) consent, a time will be arranged for an interview. The interviewer is experienced in working with children and young people.

This study also aims to explore the experiences and support needs of children and adolescents between 12-17 years of age who have lost a parent/ grandparent with MND. Information will help to develop supports for such children and adolescents.

Length of interview:

The interview will be approximately 20-30 minutes long. This research has been approved by the Human Research Ethics Committee at Curtin University, WA. The Chief Investigator is Dr Moira O’Connor. If you would like to participate in the study or would like more information please contact the Research Officer Kathy Deas: Phone: (08) 9266 1757, mobile:0411 806 386 or email: k.deas@curtin.edu.au

More information for parents and grandparents  

More information for Children and adolescents who have a parent or grandparent living with MND

More information for bereaved parents or grandparents

More information for bereaved children

Phase 3 Study of Dexpramipexole in ALS/MND

Click here for more details

DNA Bank

The Australian Motor Neuron Disease DNA Bank was set up to look for genetic susceptibility to all forms of Motor Neuron Disease. The aim of this Bank is to provide a resource for researchers undertaking studies into the causes of MND. The Bank is managed by A/Prof Roger Pamphlett in the Faculty of Medicine at The University of Sydney. State MND Associations have over the years collaborated with the DNA Bank to organise regular DNA donor drives around Australia. People living with MND and their family and friends have participated in vital research through these DNA donor drives.

The MND DNA baqnk at the University of Sydney is not currently collecting samples.

THe last update from the DNA bank available here

ANZAC Research Institute - Family studies and genetic analysis of MND

Our MND research team at the Northcott Neuroscience Laboratory at the ANZAC Research Institute in Sydney has recruited MND families for over 10 years. These have been identified through our close association with neurogenetic clinics and through our role as a referral centre for DNA diagnostic testing. Our current MND family cohort stands as one of the largest worldwide. For more information on our research see our website

MND family recruitment
We are actively recruiting MND families and family members for our research. If you or your family are interested in participating in our research, please contact Carolyn Cecere at ccecere@anzac.edu.au or (02) 9767 7016.

There is no specific test for the diagnosis of MND and treatment is extremely limited. The only known causes of MND are mutations in particular genes that lead to death of motor neurons. The known MND genes only account for about 2% of all cases. The goal of our research is to gain an understanding of the biological basis of MND through identification of defective genes that cause the death of motor neurons seen in both ALS and non-ALS MND. This understanding is a prerequisite to effective diagnosis, treatment and prevention of MND.

The causative disease genes remain to be identified in most MND families. We have commenced genome-wide genetic linkage scans among families within our cohort in an effort to identify these genes.

Australian MND Registry

The Australian Motor Neurone Disease Registry (AMNDR) is a clinical database that provides an opportunity for all people living with MND in Australia to actively contribute to research. Latest update available here.