MND NSW is a strong advocate for the advancement of research into motor neurone disease. In Australia there are several ways in which you can actively participate in research into motor neurone disease. While MND NSW supports research into MND, individuals need to carefully consider and determine if participation is right for them. You can find out how you can participate in research in this section.

Professor Vicki Flood from the University of Sydney is currently recruiting people living with MND to take part in a pilot study running from Westmead Hospital in Sydney. The study will evaluate the effects of an extra virgin olive oil enriched diet and active swallowing exercises on swallowing ability, speech, and weight status of people with MND.

You are invited to participate in a new research project that is looking for risk factors that might precipitate motor neurone disease (MND). An online anonymous questionnaire asks a series of questions

Australian MND RegistryThe Australian Motor Neurone Disease Registry is a clinical database that provides a means to facilitate the collection and analysis of MND patient data such as demographics, site of onset, diagnosis data, treatment type, changes in functional capacity, complications related to disease progression and the impact of new treatments and interventions for MND. For more information speak to your neurologist at your next visit.

Visit Australian Motor Neurone Disease Registry website...

Based at Neuroscience Research Australia (NeuRA), FRONTIER is a research clinic focusing on frontotemporal dementia and associated syndromes, including MND. However, acceptance of a donation is subject to good clinical records being made available, a recent MRI or brain scan and a blood test.

The Lighthouse Project is a Phase 2 study of antiretroviral therapy aiming to determine the safety and tolerability of Triumeq and provide preliminary data on whether the drug can slow down progression of MND. The investigators hope to start recruiting for this study in September 2016*. The study will be conducted at three sites in Sydney (The University of Sydney, Macquarie University and Westmead Hospital) and one in Melbourne (Calvary Healthcare Bethlehem Hospital) with ten participants from each site who meet certain inclusion criteria.

The Phase 1 Dose Escalation and PK Study of Cu(II)ATSM in ALS/MND trial is a multicentre, open-label, single and multiple dose-escalation and pharmacokinetic study of Cu(II)ATSM to determine the recommended phase 2 dose.