The New Zealand Motor Neurone Disease Registry was launched on on Monday 22 May 2017, just eight months after 4000 participants in 14 fundraising walks all over New Zealand raised the funds to establish the Registry.
Dr Claire Reilly, the coordinator of the nationwide Walk 2 D’Feet MND fundraising events, will be the first person with motor neurone disease (MND) to officially enrol with the New Zealand MND Registry. “I’m overwhelmed and overjoyed to see a Registry for MND launch in New Zealand. Helping create the Registry was high on my bucket list.”
Dr Reilly is a medical doctor and will also sit on the Registry’s steering committee. The 43-year-old says: “I consider myself lucky to have lived with MND for ten years. Most people with MND don’t live anywhere near that long. That’s why a local MND Registry is crucial, because it will allow researchers to quickly find enough participants to create meaningful studies.”
Following the global Ice Bucket Challenge social media phenomenon in 2014, major progress has been made in the development of new treatments for MND, also known as ALS (the most common type of MND) or Lou Gehrig’s disease.
Several new treatments are in development to improve life expectancy for those with MND, a rapidly progressing neurological disease. Most people with MND live less than three years after diagnosis.
When a trial of these treatments is being planned anywhere in the world, it is important that suitable individuals can be found and contacted quickly in order to participate. The best way of ensuring this can happen is to collect an individual’s details in a registry.
The New Zealand Motor Neurone Disease Registry has been created in partnership between the Auckland District Health Board’s consultant neurologist and neurogenetic researcher, Dr Richard Roxburgh, and MND New Zealand. Funding has been provided by MND New Zealand, a not-for-profit organisation that provides crucial support to people living with MND in New Zealand, their families, carers and healthcare professionals.
Renowned MND researcher Professor Chris Shaw, a professor of neurology and neurogenetics at King’s College London, says: “I have seen how registries such as this rapidly increase the flow of information about research and clinical trials to patients and their multi-professional teams. With better information many more patients can actively engage in the rapidly changing field of research. The Registry, combined with a new MND Research Hub led by Dr Emma Scotter at the Centre for Brain Research, firmly links Kiwi MND patients to the international effort to discover more effective treatments for this dreadful disease.”
In 2011, one in every 200 deaths in New Zealand was due to MND. The worldwide incidence of MND is predicted to increase 69% by 2040.
The launch will begin with a few words from MND New Zealand President Beth Watson, followed by speakers Professor Sir Richard Faull of the Centre for Brain Research, Paul Talman, Principal Investigator of the Australian MND Registry, and Dr Richard Roxburgh, who will welcome Dr Claire Reilly as the first person to enrol with the Registry. The launch will be followed by drinks and nibbles.