MND Registry

The New Zealand MND Registry provides an important picture of MND in New Zealand. This confidential information helps to answer questions about how many people have MND in different areas, how the condition progresses, and how the disease can affect people.

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.

Motor Neurone Disease NZ raises funds to maintain the Registry. We encourage everyone with MND to be on the registry so we can get the best understanding possible of MND in New Zealand.

Join the MND Registry

Additional information about the MND Registry is available in the patient information sheet.

To find out more or to join the New Zealand Motor Neurone Disease Registry, please contact the Registry Curator, Margaret Ryan via email or phone on 0800 MND REG (0800 663 734). Alternatively you can sign-up for the registry online by completing the participant consent form.

About the MND Registry

The New Zealand MND Registry connects people with MND to researchers, informing participants if they are a suitable candidate for research studies. It is run by Dr Sarah Buchanan from the Neurology Department at Dunedin Hospital, and the University of Otago.

The MND Registry collects demographic, contact and clinical information, as well as genetic information if this is known. Researchers can apply to use this information (which is anonymised) to help better understand MND in New Zealand and to compare to other countries.

Data is stored anonymously in a secure online database maintained by the University of Otago.

The MND Registry was launched in May 2017. Over time, it will help grow MND research in New Zealand because it helps researchers to find study participants quickly and easily.

The MND Registry will also provide valuable information to guide the future development of support services.

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."

Download the New Zealand MND Registry brochure (PDF)

Frequently Asked Questions

What is a patient registry?

What does the registry aim to do?

The aim of the registry is to learn more about MND in New Zealand, and to help people in New Zealand with MND to participate in 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.

Am I eligible to participate?

If you have been diagnosed with motor neurone disease (including ALS and other variants), 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 New Zealand MND 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.

What does it involve?

What are the benefits for me?

You will be asked if you wish to be involved in research. If you do, 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.

What happens to my information?

Your data is stored securely at the University of Otago and also anonymously in an online database at the University of Otago. Only the New Zealand MND Registry staff at the University of Otago will be able to link your personal details with your health information. This information is not shared with anyone else, and it is not available to anyone from Motor Neurone Disease NZ.