Motor Neuron Disease (MND) is a rapidly progressive neurodegenerative condition that places substantial burden on individuals, whānau, and health systems. Despite the existence of the New Zealand MND Registry, the epidemiology, clinical course, and ethnic variation of MND have not been examined systematically at a national level, leaving prevalence, incidence, and demographic patterns largely unknown.
This project leverages Aotearoa New Zealand’s world‑leading linked administrative data to validate and extend the MND Registry. By integrating pharmaceutical dispensing data for riluzole, coded mortality records, and hospital discharge data, the research team will conduct a retrospective observational study to define incidence, prevalence, and survival patterns across age, sex, ethnicity, and region.
A further aim is to develop methodologies for studying MND outcomes across broader administrative datasets, while strengthening partnerships with sector stakeholders, including Māori and Pacific communities, to support equitable and culturally grounded research.
Principal Investigator
Dr Sarah Buchanan
Funded by
University of Otago under the University of Otago Research Grant