The MND 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 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.
Lighthouse II phase 3
MND 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 is looking at whether human endogenous retroviruses (HERVs) play a role in motor neurone disease and is 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 have elected to participate in this trial opportunity, with a total of 20 places (approximately 5 per centre) available for MND New Zealand clients. Dr Alan Stanley, Hawkes Bay neurologist and MND New Zealand Council member will be the New Zealand Principal Investigator.
To be eligible, participants must be on the NZ MND Registry, reside in one of the four site locations and meet the inclusion criteria set by the trial.
MND New Zealand urges all people with MND who wish to be considered for this trial and future opportunities to enrol with the NZ MND Registry as soon as possible before the end of August. If you have already enrolled with the Registry you don’t need to enrol again.
Enrol online here or contact the Registry Curator, Dympna Mulroy, email or phone on 0800 MND REG (0800 663 734).
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.
Dr Emma Scotter (Centre for Brain Research, The University of Auckland), Dr Richard Roxburgh (Neurogenetics Clinic, Auckland City Hospital), and collaborators are recruiting for a study of the genetics of motor neurone disease in New Zealand.
Dr Scotter says, “We invite people with MND (familial or sporadic, total 300 people) and people without MND and no family history of MND (total 30 people) to participate.”
The purpose of the study 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.
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:
Freephone: 0800 793 121
Depending on funds available, the MND NZ Research Fund will consider offering financial assistance for a Masters or PhD student doing approved MND research. We will provide an update when the extent of our current commitments is known.