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.

Researchers from the School of Behavioural, Cognitive and Social Sciences at the University of New England are investigating the role of psychological flexibility on understanding and acceptance of PEG tubes and non-invasive ventilation (using a BiPAP machine) in people with Motor Neurone Disease (MND/ALS). If you are aged 18 years or over and have been diagnosed with MND/ALS (regardless of whether you have opted for one of these interventions), you are invited to participate in this study.

Around 10% of people with MND have familial MND, and two-thirds of these individuals will carry a genetic fault in a currently known MND gene, such as C9orf72 and SOD1. Once the genetic change causing MND in the family is identified, relatives can decide whether to have genetic testing to predict whether they are at risk of developing MND in future. Little is known about how individuals from these families decide whether to have genetic counselling, have genetic testing and undergo reproductive options. In fact, no Australian studies have been performed to date. If you are from a family with familial MND and there is a known genetic fault in the family,

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.