Our research strategy

Motor neurone disease (MND) refers to a group of progressive neurodegenerative disorders affecting motor neurones, the most common of which is amyotrophic lateral sclerosis (ALS).

There are over 400 people estimated to be living with MND in New Zealand (NZ). Extrapolating from New Zealand research by Cao et al (2018), it is likely that over 150 people will die of the disease each year. A similar number will be diagnosed each year. Research suggests that the incidence of MND is likely to be higher in NZ than elsewhere.

Median survival time from onset to either death, >23 hours per day of non-invasive ventilation or tracheostomy is around three years for ALS. The time is even shorter from diagnosis.

Motor Neurone Disease New Zealand (MND NZ) is a not-for-profit organisation established to help support people with MND and their family and whānau. In the absence of a cure, we focus on making time count for people affected by MND by offering personal support, advocacy, education, and supporting research.

The MND NZ Research Strategy builds on the previous research strategy (2019-2022). It encourages 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.

• Improve care for people with MND

  While work continues toward better treatments, we must support those affected now or soon by MND. Research on care will also develop increased interest and expertise in MND amongst health professionals and academics, developing leaders in MND care to help share best practice across the professions and undergraduates nationwide to benefit people with MND. NZ-based evidence also strengthens advocacy efforts.

• Progress toward better treatments and, eventually, a cure
  We aim for a future where MND is either curable or significantly better managed. Preclinical research helps understand the disease and identify targets for new therapies, while clinical research aims to bring potential treatments closer to reality. Supporting NZ-based researchers contributes to both national and international progress and reflects the strong desire within our community to have development of and access to new therapies.

• Ensure clinical trial opportunities are available for New Zealanders with MND
  Many people with MND want the opportunity to participate in a clinical trial. Running trials in NZ may offer earlier access to promising treatments, build expertise and interest in MND among neurologists, and strengthen international research connections. Participation in clinical trials also aids progress toward better therapies and a cure.

• Have an active, collaborative MND research workforce
  A strong, connected research workforce is essential to achieving all other strategy goals. Collaboration between academics and health professionals will mix quality design and practical purpose for research related to care. Such collaboration will increase knowledge about MND for both groups, then benefiting undergraduates and the workforce. Collaboration is encouraged at a local, national and international level.