A Registry of people with MND in New Zealand will be officially launched in May, sponsored by MND New Zealand. Funds raised for research by the Walk 2 D’Feet MND in 2015 and 2016 are being used establish and maintain the Registry.
To enrol or ask questions about enrolling, please contact the Registry Curator.
Phone: 0800 MND REG (0800 663 734)
The New Zealand MND Registry will connect people with MND to researchers, informing participants if they are a suitable candidate for research studies.
Over time, the MND Registry 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.
It is estimated that 310 people are living with MND at any one time in New Zealand. We aim to capture information about every person with MND in the New Zealand MND Registry, to answer questions about how many people have MND in different areas, how the condition progresses, and how the disease can affect people.
The Registry will collect demographic, contact and clinical information, as well as genetic information if this is known. Data will be stored anonymously in a secure online database maintained by the Australian MND Registry.
"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.
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).