Research projects
The Motor Neurone Disease New Zealand Research Fund was established in 2015. The goal of the fund is to encourage, support, and generate interest in the creation of New Zealand based MND research. We will only support quality research that has ethical approval.
MND Registry
MND New Zealand developed and funds an MND Registry for New Zealanders. The MND Registry is compatible with international registers, so that the data collected may be used internationally. The MND Registry will allow us a more accurate understanding of the incidence and prevalence of MND in New Zealand, by demographics and region. We also believe that having New Zealand cohorts readily available will encourage NZ based research.
MND Insight Research study
Research is vital to improving the lives of people with motor neurone disease (MND) and their whānau. It helps us understand what’s working, what isn’t, and where urgent improvements are needed across care, services, and support.
In early 2025 we launched the MND Insight Research Study, the most comprehensive research of its kind in Aotearoa. Led by Dr Natalie Gauld, our Research Advisor and Best Practice Advocate, the study gathers the voices of nearly 300 people with MND, family carers, and bereaved carers to identify gaps and opportunities across diagnosis, access to equipment, mental health, financial impacts, and more.
We are deeply grateful to everyone who took part in this study.
Lighthouse II phase 3
Motor Neurone Disease New Zealand is proud to have been able to contribute the funding that secured access to this phase 3 trial for people living with MND in New Zealand. This international clinical trial looked at whether human endogenous retroviruses (HERVs) play a role in motor neurone disease and was the first-ever phase 3 clinical trial to be offered to people with MND in New Zealand, across multiple locations.
Research teams in Bay of Plenty, Wellington, Christchurch and Dunedin participated in the trial, with a total of 20 places (approximately 5 per centre) for people eligible. Dr Alan Stanley, Hawkes Bay neurologist and Motor Neurone Disease New Zealand Board member was the New Zealand Principal Investigator.
In April 2025 the Lighthouse II clinical trial was stopped early, following a planned interim analysis. The analysis found that the treatment being investigated, Triumeq, did not show the level of benefit hoped for in slowing the progression of motor neurone disease.
MND Research Network
Motor Neurone Disease New Zealand provided funding to establish a nationwide MND Research Network to facilitate and disseminate MND research in New Zealand. The MND Research Network connects MND researchers and works to attract new researchers to the field.
Genetics Study
Motor Neurone Disease NZ proudly helps fund vital research at the Centre for Brain Research at The University of Auckland and supports the latest genetics study.
The genetics study, led by Dr Emma Scotter (Centre for Brain Research, The University of Auckland), Dr Richard Roxburgh (Neurogenetics Clinic, Auckland City Hospital), and collaborators, is to understand the genetic causes of MND in New Zealanders. In addition, the study aims to test how certain MND gene mutations affect human cells.
Recruitment is now only for people with familial MND (you and one or more closely related family members have been diagnosed with MND or frontotemporal dementia). The researchers might also offer further research for your family members including a family meeting/hui. Please contact the researchers for more information.
Massey University Research Study
MND New Zealand supports the Occupation and Environmental Risk Factors for MND study conducted by the Centre for Public Health Research at Massey University in Wellington.
The study investigated the relationship between MND in New Zealand and a range of known or suspected occupational and environmental exposures.
Preliminary results indicate elevated risks for those working in agriculture (in particular horticulture and fruit growing), construction, automotive fuel retailing and computer services.
The first paper and findings – Occupation and Motor Neurone Disease: A New Zealand case-control study – has been published in Occupational & Environmental Medicine.
Click here to access the paper.
If you have questions about the study, then please contact:
GRACE CHEN
Freephone: 0800 793 121
Email:
Future projects
Motor Neurone Disease NZ encourages and, where possible, funds research in NZ that improves evidence-based care and support for people with MND, aids access to clinical trials and contributes to the international effort to identify the causes of MND, find better treatments, and ultimately, a cure for MND.
Page updated:
26 February 2026