In Australia
The MND Research Institute of Australia
Research into the possible causes of and treatments for 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 most 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.
The MND Research Institute of Australia allocated a total of $675,014 for grants commencing 1 January 2010.
A list of all grants awarded, including named grants, and grant summaries can be seen here
DNA Bank
The Australian Motor Neuron Disease DNA Bank has been 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 collaborate with the DNA Bank to organise regular DNA donor drives around Australia. People living with MND and their family and friends can participate in vital research through these DNA donor drives.
Latest 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.
Voice your views on MND
Amanda Dean is looking for people with MND to participate in her PhD project to voice their views on the disease. This project plans to develop a new understanding of how people living with MND can maintain or increase health related quality of life, including for those who will be affected in the future.
What is the aim of the project?
An exciting new research project is beginning at the University of Exeter, investigating lived experiences in neurodegenerative diseases. This project aims to endeavour to get to the heart of what matters most to the people living with neurological conditions, such as MND.
Amanda Dean, who is leading this project, is interested in discovering key life moments and turning points, so that the development of MND and how this impacts upon your life can be captured.
How can I get involved?
This research is focusing on those who might have had to make major lifestyle changes. You may be eligible to participate if you:
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Live in Australia
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Have received a confirmed diagnosis of MND from a certified medical practitioner. Time since diagnosis and type of MND is not important
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Have acurrent or past undertaking of regular physical activity, a minimum of three times per week - the specific activity is not important, for example, recreational joggers, hikers, commuter cyclists as well as competitive or non competitive athletes of individual or team sports are free to participate.
Live in Australia
Have received a confirmed diagnosis of MND from a certified medical practitioner. Time since diagnosis and type of MND is not important
Have acurrent or past undertaking of regular physical activity, a minimum of three times per week - the specific activity is not important, for example, recreational joggers, hikers, commuter cyclists as well as competitive or non competitive athletes of individual or team sports are free to participate.
All those who choose to participate need to be willing to talk or write about experiences, both past and present, to facilitate painting a vivid picture of their life.
What will I be asked to do?
There are two ways for you to take part in this research:
- 1. Through consenting to meet with Amanda, in a place of your choice and comfort, to undertake an interview. This would be very informal in nature, with the focus being on what you would like to tellAmanda about your experience with illness, and how this has made an impact on your life
- 2. Via ‘pen-pal' correspondence. It is appreciated that some individuals, dependent on the progression of MND, or geographical location may find it easier and more convenient to converse through email or by other written means. Therefore, written correspondence is a method of communication that this study welcomes, and provides a greater opportunity for more people to participate.
Due to the unpredictable and constantly changing nature of MND, some participants will choose to be one-off contributors to this study. For this reason this project welcomes as many people as possible to take part and share their views, to create and develop a clear, vivid and detailed picture of lived experiences.
More information
The project leader, Amanda Dean explains that "If reading this brief overview of the study has sparked your interest, and you think you might like to pursue this further, I invite you to get in touch; my contact details are below. Please feel free to enquire with any questions or to request a more detailed information pack to be forwarded to you."
Contact details:
Amanda Dean
PhD Research Scholar
Social Science and Health Research Unit
Building F, Level 4;
Monash University
PO Box 197
Caulfield East
Vic 3145
Email: acd205@ex.ac.uk
A Monash University study of patient experiences of receiving stem cell therapy outside Australia
HAVE YOU BEEN TRAVELLED OUTSIDE AUSTRALIA TO RECEIVE STEM CELL TREATMENT?
WHAT WAS THIS EXPERIENCE LIKE?
HOW DID YOU LEARN ABOUT STEM CELL THERAPY OFFERED ABROAD?
WHAT THINGS DID YOU CONSIDER IN YOUR DECISION TO TRAVEL OVERSEAS?
WHAT HAVE YOUR EXPERIENCES WITH DOCTORS BEEN LIKE SINCE YOU RETURNED TO AUSTRALIA?
These are some of the questions we are trying to answer in a new study about patient experiences of travelling overseas to receive stem cell treatments.
The interview is confidential and takes about 1 hour.
If you have travelled abroad and would like to participate or find out more about the study please call Kate on (03) 9905 4292 or send an email to Kate.Seear@arts.monash.edu.au
Prince of Wales Medical Research Institute
Clinical Trial
The study is a phase II, parallel groups, double-blind, randomised-controlled trial.
Patients in this study will be assessed longitudinally over a 16-week lead-in phase prior to randomisation.
The trial will require patients to attend Prince of Wales Hospital 10 times over the course of approximately one year. The trial is divided into two distinct phases: 1) a 16-week lead-in phase; and 2) a 40-week treatment phase.
It is anticipated that for every patient, each visit to hospital will be approximately 3 hours in duration.
Measures of ALS Functional Rating Scale-revised, Neurophysiological Index, FVC, SNIP will be undertaken longitudinally in addition to assessment of cortical and peripheral excitability.
Correlations will be sought between molecular, neurophysiological and clinical data, and functional data using the ALS functional rating scale, comparing the active treatment patient group to placebo.
EMOTION AND COGNITION IN MOTOR NEURONE DISEASE
Professor John Hodges and his team at Prince of Wales Medical Research Institute, in collaboration with Professors Dominic Rowe and Matthew Kiernan, and Motor Neurone Disease Australia, are conducting a research project focusing on cognition and emotion in Motor Neurone Disease (MND). The primary aim is to identify the prevalence and pattern of cognitive and emotional changes in patients with MND, and the potential impact on activities of daily living, decision-making, and carer burden. The first part of this project is a postal survey, which consists of two questionnaires; one for people with MND and one for carers. The questionnaires are designed to evaluate changes in aspects of cognition, especially judgement, problem solving and alterations in emotion. These surveys have been posted to members in NSW, Victoria, Queensland, South Australia, ACT and Tasmania.
Professor Hodges was a keynote speaker at the national MND Conference on 23 June 2009 in Sydney his presentation was entitled Motor neurone disease and frontotemporal dementia: overlap or continuous.
