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.

You are invited to participate in an ongoing research project that is looking for risk factors that might precipitate motor neurone disease (MND). An online anonymous questionnaire asks a series of questions about you that may give clues as to what factors trigger MND. All people are can now complete the questionnaire - people with the sporadic form of MND (that is, the type that does not affect other family members), people with familial MND, relatives and others without MND. 

The Australian Motor Neurone Disease Registry is a de-identified disease based registry that facilitates the collection and storage of Motor Neurone Disease data. It includes information such as patient demographics, site of onset of disease, diagnosis date, treatment type, changes in disease, complications related to disease progression and the impact of new treatments and interventions for MND.

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.