The New Zealand MND Registry connects people living with MND to researchers, enabling New Zealanders to participate in research and helping MND research grow in New Zealand. MND New Zealand raises funds to establish and maintain the Registry. To enrol or ask questions about enrolling, please contact the Registry Curator, Kerry Walker. Email: MNDRegistry@adhb.govt.nz Phone: 0800 MND REG (0800 663 734)
The New Zealand Motor Neurone Disease Registry connects people with MND to researchers, informing participants if they are a suitable candidate for research studies.
The MND Registry collects demographic, contact and clinical information, as well as genetic information if this is known. Data is stored anonymously in a secure online database maintained by the Australian MND Registry.
The MND Registry was launched in May 2017. Over time, it will facilitate the growth of the MND research field in New Zealand by enabling researchers to find study participants quickly and easily. The MND Registry will also provide valuable information to guide the future development of support services.
Over 300 people are living with MND at any one time in New Zealand. The Registry aims to capture information about every person with MND in New Zealand, to answer questions about how many people have MND in different areas, how the condition progresses, and how the disease can affect people.
As well as enrolling people with MND, the MND Registry will also enrol people without MND who have a family member with an identified genetic form of MND (including those whose affected family members have had only frontotemporal dementia symptoms, if genetic testing has identified an expansion in the C9orf72 gene).
"In rare diseases every patient counts, and the inclusion of New Zealand is a welcomed and vital addition to the MND registry collaboration led by the Australian MND Registry,” says Associate Professor Paul Talman, Principal Investigator of the Australian MND Registry.
Renowned MND researcher Professor Chris Shaw, a professor of neurology and neurogenetics at King's College London, says: "I have seen how registers 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 Register, 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."