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. 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 Institute of Australia (MNDRIA).
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.
Donate to the MND Research Tissue Bank
The MND Research Tissue 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 MND Research Tissue 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.
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.
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
PatientsLikeMe is an online treatment and outcome sharing community for people with a range of conditions including MND/ALS. The site is based in the US but is global in scope. By joining you are able to share your experiences of symptoms and treatments with others who have MND and with researchers. It provides you with the opportunity to track your health over a period of time, share ideas with others with MND and participate in research.
To find out more visit https://www.patientslikeme.com/
Money can be donated to the MND Association of Victoria or directly to the MND Research Institute of Australia (MNDRIA) 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 MNDRIA. However, the Association does consider support for other research projects, particularly those which will advance patient care and management.
Motor Neurone Disease Research Institute of Australia (MNDRIA)
MNDRIA promotes medical and scientific research into motor neurone disease and other associated diseases.
The Motor Neurone Disease Research Institute 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.
MNDRIA 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. MNDRIA 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.
MNDRIA is an Approved Research Institute, meeting the conditions of the Income Tax Assessment Act Section 73A. Gifts to the Institute 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
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