Research

MND Registry

The New Zealand MND Registry provides an important picture of MND in New Zealand. This confidential information from patients with MND 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 MND Registry also helps MND research grow in New Zealand through access to anonymised patient data and by informing people who wish to be involved in research about research projects that they would be suitable for.

The MND Registry was started in 2017. Motor Neurone Disease New Zealand (MND NZ) played a pivotal role in establishing the Registry. After identifying a desire amongst their members to participate in research, and that a registry was the best way to facilitate this, MND NZ then fundraised and sought out the expertise to make it happen.

The MND Registry continues to be funded by MND NZ through its fundraising.

MND NZ encourages everyone with MND to be on the MND registry so we can get the best understanding possible of MND in New Zealand and increase research on MND in New Zealand.

Join the MND Registry

It’s easy to 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 by completing the online participant consent form or by printing and filling out the paper participant consent form.

About the MND Registry

The New Zealand Motor Neurone Disease Registry 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. When a person joins the MND Registry that allows the MND Registry staff to collect this information from their clinical records related to MND. This information is anonymised for research use.

The MND Registry data is stored anonymously in a secure online database maintained by the University of Otago. No one outside of the MND Registry has access to the names of people in the MND Registry.

The MND Registry also keeps a confidential list of people with MND interested in actively participating in research projects. The MND Registry curator will contact people on this list if they are a suitable candidate for a particular research study with information about the study so they can decide whether or not they want to participate.

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, how it is managed, and how the disease can affect people including whanau. Thus, it can help guide the future development of support services.

Other countries also have MND patient registries, and researchers can compare MND in New Zealand with MND in other countries or combine information with registries from different countries to get a better understanding of the disease.

As well as enrolling people with MND, the MND Registry will also enrol people without MND who have a family member with a known genetic form of MND. This can include those whose affected family members have had only frontotemporal dementia symptoms, if genetic testing has found an expansion in the C9orf72 gene.

In uncommon diseases every patient counts, and MND NZ everyone with MND to help by joining the registry. It is quick and easy to join.

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?

A patient registry collects information about people who are affected by a particular condition. Other examples in New Zealand include a Breast Cancer Registry and Cystic Fibrosis Registry.

The New Zealand 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 health information collected for the MND Registry is taken from clinical records and anonymised. This includes the age of patients, the region they are located in, when and where their first symptoms occurred, when they were diagnosed, what treatment they received, whether they are using a wheelchair or breathing assistance, and so on. Information is taken from MND-related clinic letters while the patient is on the registry.

What is the registry for?

The aims of the registry are 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. The registry has details in one place, to help find enough patients for a study and helping speed up the testing of new treatments or the advancement of knowledge of MND.

Can I 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 living in New Zealand as citizen or permanent resident, you are eligible to register with the 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?

If you decide to participate in the registry, the MND Registry will collect information about your clinical condition and any genetic testing results, if you have had genetic testing. This will come from your clinical records, you do not need to do anything after signing up for the Registry. They will also ask for your contact information and some demographic information.

The registry curator will contact you about every 12 months to ensure that this information is up to date.

What are the benefits for me?

You will be asked if you wish to be involved in research studies. 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 contact details are stored securely at the University of Otago. Your clinical information is stored safely and anonymously in an online database at the University of Otago. Only the Registry staff at the University of Otago will be able to link your personal details with your health information.

MND NZ funds the MND Registry but does not have access to your data on the Registry.

Page last updated:

2 August 2024