There is MND research underway around the world in a bid to find effective treatments, develop better care and ultimately discover a cure for motor neurone disease.
Neurological (brain and nervous system) research is complicated and there is still a lot to learn about the complex interactions that result in motor neurones dying and what can be done to stop or slow down the death of these nerve cells once someone has MND.
This is further complicated by the fact that we still do not understand what causes MND in most cases.
Motor Neurone Disease Research Australia (MNDRA), the research arm of MND Australia, promotes and funds medical and scientific research to understand the causes, find effective treatments and discover cures for MND.
MND Research Australia has played an integral role in MND research in Australia and has awarded more than $35 million to Australian health and medical research since its inception in 1984.
Throughout the year there are opportunities to learn more about MND research.
Research Forums for the MND community and MND Ask the Experts sessions: these free information sessions hosted by the state MND Associations are presented by experts in the field on a variety of topics relating to MND including latest research. To learn how to access previous session recordings or to find out when the next session will be held contact the MND Association in your state or territory.
MND Connect: these free research update sessions are hosted by MND Research Australia (MNDRA) and are live streamed and recorded. To view previous sessions visit the MND Australia YouTube Channel
State of Play: these webinars are hosted by MNDRA on a regular basis to provide updates on latest research. Follow MND Australia on Facebook to see when new sessions are coming up. To view previous sessions click here
MND Australia research newsletters and updates are freely available on our website or can be emailed to our subscibers when they are published:
An international ALS/MND Connect (previously known as Ask the Experts) is held each year hosted by the International Alliance of ALS/MND Associations and the local host organisation. The event is live streamed and recorded. Visit The Alliance Facebook page to access previous sessions and to find out about the next session.
Research Information Sheets for people living with MND are available from the Motor Neurone Disease Association of England, Wales and Northern Ireland.
The ALS Therapy Development Institute (ALS TDI) is a research institute in Cambridge, Massachusetts, USA dedicated to developing new ALS/MND treatments. Click here. The institute’s website also lists clinical trials specifically for amyotrophic lateral sclerosis (ALS) in North America, South America, Europe, Asia and Australia.
ALSUntangled is a unique resource that reviews alternative and off label treatments, with the goal of helping people with ALS make more informed decisions about them. Click here.
The Australian Government Clinical Trial website is a search portal for clinical trials being conducted in Australia. Click here.
The International Clinical Trials Registry Platform is the World Health Organisation's search portal for clinical trials. Click here.
ClinicalTrials.gov is the United States (US) National Institutes of Health's (NIH) database of private and public clinical trials conducted in the US and elsewhere around the world. Click here.
Many people with MND are eager to participate in MND research. If you would like to know more, talk to your neurologist about what research opportunities are available in your area. Below are some research projects that you may like to learn more about and potentially participate in:
The Australian MND Registry aims to improve patient care through continuous evaluation of patient management and associated outcomes. It is a clinical database that has been collecting and analysing MND patient data since 2004. Participating in the registry provides an opportunity for people living with MND to actively contribute to research.
The Sporadic ALS Australia Systems Genomics Consortium (SALSA-SGC) aims to improve understanding of sporadic MND. The consortium is led by Professor Naomi Wray, from the University of Queensland and Professor Ian Blair, from Macquarie University, NSW. SALSA –SCG collects clinical data and biological samples from people living with MND attending MND clinics across Australia to help underpin future research.
The MiNDAUS Partnership Project, Motor Neurone Disease: Patient centred care for a progressive neurological disease - evidence driving policy, was established in 2018 with funding from the National Health and Medical Research Council, Australian MND organisations and private donors.The MiNDAUS Partnership is constructing a secure online platform with two distinct parts to bring the The MiNDAUS Patient Registry, and the MiNDAUS Clinical Registry together. During 2021 the MiNDAUS Clinical Registry will replace the Australian MND Registry and will offer linkage to the SALSA genomics project. This new online platform will become available for patients and clinics across the country. The creation of one centralised data system will facilitate access to research for people impacted by MND and improve efficiency and coordination of efforts across Australia towards the search for a cure, effective treatments and improved supportive care.
Australian clinical trials are underway that test experimental drugs, medical devices, treatments and a host of therapies for their safety and effectiveness in people living with MND. People living with MND can also participate in research focused on improving health care and wellbeing.
MND Research Tissue and Brain Banks are organisations in Australia that care for brains and related samples donated by individuals who have had neurological disorders or issues, including MND and Parkinson’s disease. Brain banks help researchers to understand how brain diseases occur. The research aims to improve diagnosis, develop effective treatments, and hopefully, cures.
A brain or spinal cord tissue donation is made when someone decides to donate their brain for medical research following death. Speaking with your neurologist can help you to learn more about what you need to do to organise brain or spinal cord tissue donation. It is also important for researchers to compare brains and spinal cords from people who do not have MND. Family members and friends may also consider registering as a donor. Brain donations are organised by state based brain banks. A list of state based brain banks can be found on the Brain Foundation website.