Participate in research

The MND Research Institute of Australia (MNDRIA) supports many MND research projects in Australia. In 2018, the Institute is providing more than $3.1 million for research that will help to understand the causes, provide better care and find effective treatments for MND.
 
Some research projects involve participation from people living with MND as well as their families and carers. Studies may collect clinical information through questionnaires, assess a patient’s eating and exercise habits, measure a patient’s muscle or respiratory function, or use biological tissue samples donated by patients in laboratory research.

PARTICIPATION IN RESEARCH STUDIES

There are a variety of MND research studies currently underway around Australia that require participation of people with MND. Some studies are focused on particular types of MND, like amyotrophic lateral sclerosis (ALS). You can see a list of projects funded by MNDRIA in 2018 here.
 
Participation in such studies is generally managed by specialist MND clinics in association with different research institutes. These specialised clinics, listed here, are best placed to link patients to research projects. If you would like to know more, talk to your neurologist about what research opportunities are available in your area.
 
People living with MND may be able to participate in research in different ways. You may be able to donate tissue samples, including skin and muscle biopsies, for use in laboratory-based projects; other studies run tests to measure muscle or respiratory function and fatigue in individuals; you can also participate in studies assessing exercise habits and nutritional needs of MND patients – these are examples of current projects funded by MNDRIA.

Looking for genes linked to sporadic MND

About 90% of MND is sporadic which means it is an isolated case with no family history of the disease. As for most human disease, sporadic MND is likely to result from both genetic and non-genetic factors acting together.
 
The Sporadic ALS Australia (SALSA) Consortium was established in 2015 to study the genetic factors associated with sporadic MND. The Consortium was funded by the MND Australia Ice Bucket Challenge Grant. As part of the SALSA network, researchers across the country are working together to build an integrated system for the collection and analysis of DNA samples and clinical data. SALSA links in to a global effort to find genes associated with MND called Project Mine. New genetic discoveries can be found by studying a very large number of individuals affected by sporadic MND. People with sporadic MND can donate a DNA sample to SALSA via many specialised MND clinics
 
Using research models of MND to understand the disease

Scientists use different tools to model MND so that they can study possible mechanisms of the disease. For example, studies may use mouse models or cells grown in culture to look at genetic pathways that are known to malfunction in familial MND.
 
Some researchers at Macquarie University are using skin cells taken from people with MND to reproduce cellular changes seen in affected motor neurones. People with MND can donate a skin biopsy and using these cells, scientists can easily study what is happening at a cellular level in the disease.

FightMND Drug Screening Program

This Program aims to find new potential treatments for MND. Researchers based at the Florey Institute of Neuroscience and Mental Health will test the effects of thousands of experimental and clinically approved drugs on motor neurones derived from the skin cells of people with MND. They hope to accelerate the process of identifying candidate drugs, which can then be tested on people in clinical trials. Find out how to get involved

Studying muscle weakness 

Muscle weakness occurs in MND when affected motor neurones retreat from the muscle cells that they usually instruct. It is thought that this disconnection between motor neurones and muscles is an early event in MND. Muscle twitching is also a symptom experienced by many people with MND.
 
Research supported by MNDRIA at the University of Queensland is using muscle cells to study communication between muscle cells and motor neurons. A small biopsy is donated by people affected by MND. This research aims to show how the connection between these cells could be stabilised to improve muscle strength.
 
Measuring motor neurone activity

Hyperexcitable or overactive motor neurones have been identified in the progression of MND. Ongoing research is looking at hyperexcitability in people with MND. This can be done by stimulating neurones in the brain with an electromagnetic field placed on the scalp and measuring their response. Detecting cortical hyperexcitability early in patients could a useful diagnostic tool. This research is underway at the University of Sydney and Westmead Hospital.
 
The influence of diet and exercise

It has been shown that people with MND have increased energy needs, with poor energy intake resulting in weight loss and influencing disease progression. Many people with MND also have questions regarding active exercise and whether it is beneficial.

Funded by MNDRIA, a trial to evaluate the effects of diet and a program of active exercise is set to begin at the University of Sydney and Westmead Hospital. There are also ongoing studies at the University of Queensland to understand why people with MND have increased energy needs. 
 

PARTICIPATION IN CLINICAL TRIALS

For information about what clinical trials are taking place in Australia > more.
 

ONLINE CLINICAL SURVEYS AND DATABASES

The ALS Quest is an online questionnaire for research into ALS and MND. It is a project developed by Associate Professor Roger Pamphlett at The University of Sydney, who is looking at the potential environmental factors that may play a part in MND. Both people with and without ALS/MND are invited to complete the questionnaire. You can complete the questionnaire online.
 
The Australian MND Registry is a database that facilitates the collection and storage of data about people diagnosed with MND, the progression of their disease and their care. The database collects information on patient demographics, site of onset of disease, diagnosis date, treatment type and changes in disease. This information is collected by the patient’s clinician and then de-identified so that it can be used by researchers who apply to access the data. Talk to your neurologist about joining the Registry.
 
Why get involved in the Australiian MND Registry? The major aim of the Australian MND Registry is to improve patient care and management with continuous evaluation of any interventions and outcomes. As new therapies are proposed for MND treatment, the Registry will be an important tool for clinical trial enrolment. The registry also links information between researchers around Australia, which aids in furthering our understanding of MND.
 

BRAIN TISSUE BIOBANKS

A biobank is a collection of biological samples that are stored, and matched to the patient’s clinical information, for research purposes. Blood and tissue samples are collected from patients who give their consent. A biobank may be established to support a specific project or samples may be used in a broad range of research, in which case patients cannot be advised of the exact nature of downstream research.

The Australian Brain Bank Network (ABBN) is a network of existing state- or research institute-based biobanks collecting brain tissue. Their resources are combined as the ‘Australian Brain Bank Network’. Brain tissue samples and data are accessible to researchers with appropriate ethics approval wishing to research brain and mind disorders such as Alzheimer's disease, multiple sclerosis, schizophrenia, depression and MND. 

Tissue samples are collected through research institutes and a few hospital pathology departments in each state. For a list of centres currently collecting post-mortem brain tissue for the ABBN, click here.
 
If you are already registered as an organ donor with the Australian government DonateLife Network, you are still able to donate your brain tissue to ABBN. Other frequently asked questions for donors can be found on the ABBN website.
 
NB: The Australian MND DNA Bank, University of Sydney, is no longer collecting samples from donors. 
 
 
 

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