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 maintain the Registry.
Join the MND Registry
For further information or to join the New Zealand Motor Neurone Disease Registry, please contact the Registry Curator, Dympna Mulroy, via email or phone on 0800 MND REG (0800 663 734). Alternatively you can sign-up for the registry online by completing the participant information consent form.
About the Registry
The New Zealand Motor Neurone Disease Registry connects people with MND to researchers, informing participants if they are a suitable candidate for research studies. It is run by A/Prof Richard Roxburgh from the Neurology Department at Auckland City Hospital.
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 400 people are living with MND at any one time in New Zealand. The Registry aims to capture information about as many people with MND as possible, to help 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 Registry, combined with the 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."
Frequently Asked Questions
A patient registry collects information about people who are affected by particular conditions. The NZ Motor Neurone Disease Registry collects information about people who have motor neurone disease (MND). It collects health and contact information about the people who decide to participate.
The aim of the registry is to help those people in New Zealand with MND to participate in national and international clinical trials and research about MND, if they would like to.
The registry also aims to help researchers by assisting them to plan their research and helping to find people who may be interested in participating.
Because MND is not common, and New Zealand only has a small population, finding enough participants for a study about MND can be difficult. Without a registry to gather details in one place, finding enough patients for a meaningful study can take years, potentially delaying the testing of new treatments or the advancement of knowledge of MND.
If you have been diagnosed with motor neurone disease (also called ALS), or have a genetic form of motor neurone disease in your family, and are a New Zealand citizen or permanent resident, you are eligible to register with the NZ Motor Neurone Disease Registry.
People with family members who have an expansion in the specific gene that can cause motor neurone disease or frontotemporal dementia, C9orf72, can also participate even if their affected family members have only had dementia symptoms.
If you decide to participate in the registry, we will collect information about your clinical condition and any genetic testing results, if you have them. We will also ask for your contact information and some demographic information.
The registry curator will contact you every so often to ensure that this information is up to date.
The Registry Curator will contact you if there is any research or clinical trial available for which you may be eligible. The curator will pass on information about this study so that you can make a decision about whether you would like to participate or not. You can say yes or no to any of these opportunities as you wish.
Your data is stored securely at Auckland DHB and also anonymously in an online database maintained by the Australian Motor Neurone Disease Registry (AMNDR) at Geelong Hospital, Barwon Health, Victoria, Australia. Only the NZ Motor Neurone Disease Registry staff will be able to link your personal details with your health information.[EK19]
Brain and spinal cord donation
Some people with MND wish to donate their brain and spinal cord to the Neurological Foundation Human Brain Bank at the University of Auckland. If this is something of interest to you then please discuss the wish with your family who will carry out your wishes when you die. Also, for more information on the processes and procedures please email or phone 09 923 6072 and the Brain Bank Manager Mrs Marika Eszes will send you the details.
For more information, click here.