How can I help MND research?
If you have motor neurone disease you can help research in a variety of ways. This includes providing information on your condition, donating a blood sample or by donating your brain and spinal cord tissue after death. People without the disease can also help by taking part in research projects and by donating money to MND Victoria directly or to the Motor Neurone Disease Research Australia (MNDRA).
Join the Australian Motor Neurone Disease Registry (MND Registry)
The MND Registry is an ambitious project to register and collect data from every person diagnosed with MND in Australia. It contains de-identified data from people diagnosed with MND including information about the diagnosis, symptoms, treatment and management. This information is available to researchers who are studying MND.
The MND registry provides people living with MND with an opportunity to actively contribute to research and learn more about the disease. The participant’s neurologist will fill out a case report form detailing the treatment and health situation at the time of the visit. There are no extra tests, procedures or treatments involved. People are free to decline or to withdraw from the study at any time.
If you would like any further information concerning this project visit the MND Registry website by clicking the button below. Or contact Anna Smith by phone: 03 9595 3355 or by email: email@example.com
Donate to the Victorian Brain Bank (VBB)
The Victorian Brain Bank facilitates research into the study of MND by providing post–mortem tissue to researchers who, using current technologies aim to unlock our understanding of how MND occurs and this will hopefully lead to improvements in diagnosis, development of early diagnostic tests, therapeutic interventions and development of preventative strategies.
The Victorian Brain Bank is seeking people interested in registering for brain and spinal cord after death. It is also vital to compare brain and spinal cord from people who do not have MND. Family members and friends may also consider registering as a donor.
If you are interested in registering as a donor, or finding out more about becoming a tissue donor, visit the Victoria Brain Bank website by clicking the button below or contact: Ms Fairlie Hinton, Coordinator Victorian Brain Bank
Telephone: 03 8344 1900
Mobile: 0438 530 372
Participate in Familial MND Research
Professor Garth Nicholson and his research team based at the ANZAC Research Institute, Concord Hospital Sydney, are studying gene variations in familial motor neurone disease. Professor Nicholson and his collaborators are keen to obtain DNA samples from patients with familial motor neurone disease.
To assist this research, a single blood sample is required together with your consent to take part in the research and, where necessary, your permission to obtain a copy of clinical information from your treating physician. The blood sample can be taken locally and then sent to Sydney for analysis.
If you are interested in donating then phone (02) 9767 6796 or email firstname.lastname@example.org for further details.
Complete the ALS Quest Survey
ALS Quest is a research project being conducted by Sydney University that is looking for risk factors underlying MND (also known as ALS). The anonymous ALS Quest online questionnaire can be completed by both people with MND and people without MND.
ALS Quest asks a series of questions about a person’s lifestyle, work history and family history with the aim of discovering clues as to what factors trigger MND. The questionnaire and instructions for how to complete it can be found at www.alsquest.org
To find out further information about ALS Quest visit their Facebook page, follow them on Twitter, or contact the head researcher Associate Professor Roger Pamphlett.
Phone: (02) 8287 4989
Money can be donated to the MND Association of Victoria or directly to the MND Research Australia (MNDRA) for the specific purpose of funding research, including scientific, care and management research.
At this time, all funds received by MND Victoria for research are given to the MNDRA. However, the Association does consider support for other research projects, particularly those which will advance patient care and management.
Motor Neurone Disease Research Australia (MNDRA)
MNDRA promotes medical and scientific research into motor neurone disease and other associated diseases.
Motor Neurone Disease Research Australia funds Australian researchers in the search for cause, treatment and cure of motor neurone disease (MND). Projects funded include basic science and research into care and management of the disease.
MNDRA makes grants of funding for research following determination of the relative merits of research proposals for the study of motor neurone disease and associated diseases for the receipt of research grants. Grants are administered, and progress of the relevant research monitored and reported. MNDRA facilitates the exchange of information about motor neurone disease and associated diseases by sharing reports on research and progress of research funded by its grants via written reports and its web site.
MNDRA is an Approved Research Institute, meeting the conditions of the Income Tax Assessment Act Section 73A. Gifts to MNDRA are tax deductible. It is affiliated with other bodies, national and international, including the Motor Neurone Disease Association of Australia and the International Alliance of ALS/MND Associations.
Telephone: (02) 8287 4989
A clinical trial is a research study using human volunteers to study the safety and effectiveness of a drug, treatment, or device in changing the course of health outcomes.
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