NZ MND Patient Registry

Binte Zahra moved to New Zealand in 2016 and became the MND Registry Curator in November 2019. She completed a Bachelor of Medicine and Bachelor of Surgery from Services Institute of Medical Sciences, Lahore, Pakistan. She undertook medical training in General medicine and General Surgery in Pakistan and has also worked as medical officer in various Medicine subspecialties.

Dr Richard Roxburgh is the NZ MND Registry Principal Investigator. He is a neurologist at Auckland City Hospital and Associate Professor at the University of Auckland. He specialises in seeing patients with neurogenetic disease. One of his major research roles has been the establishment (together with the Muscular Dystrophy Association) of the New Zealand Neuromuscular Disease Registry, of which he is the principal investigator. This registry is five years old and has recruited over one thousand New Zealand patients, more than half whom have been enrolled through this registry into research studies. His principal motivation is to have enough information available on patients so they are “trial ready” as trials become available. It is this registry expertise that Richard brings to bear in establishing the NZ MND Registry.

Motor Neuron Disease New Zealand has played a pivotal role in the establishment of the Registry. It was MND NZ who identified a desire amongst their members to participate in research, identified that a registry was the best way to facilitate this, and then sought out the expertise and resources to make it happen. The registry is currently funded by MND NZ through fundraising.

Purpose

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 could take years, potentially delaying the testing of new treatments or the advancement of knowledge of MND. To resolve this issue, a patient registry for New Zealanders with motor neuron disease has been established. The NZ MND Patient Registry collects demographic and clinical information about people with MND who have chosen to enrol. The aim of the registry is to help people with MND to participate in national and international clinical trials and research about MND. It also aims to help researchers by assisting them to plan their research and helping to find potential participants.

Relationship to MND

The registry enrols anyone who is diagnosed with motor neuron disease, or anyone who has a genetic form of motor neuron disease in their family. People with family members who have an expansion in the specific gene that can cause MND or frontotemporal dementia, C9orf72, can also participate, even if their affected family members have only had dementia symptoms.

Research

The Registry aims to facilitate research and the participation of people with MND in research, rather than creating its own research.

Collaborations

The NZ MND Patient Registry is working with the Australian Motor Neurone Disease Registry, using the same digital platform to store clinical data.

Resources

The NZ MND Patient registry is a member of the Pan-Asian Consortium for Treatment and Research in ALS (PACTALS).

Contact Details

New Zealand Motor Neurone Disease Registry
Neurology Department
Auckland City Hospital
Private Bag 92024
Auckland 1142
Ph: 0800 MND REGISTRY
Mobile: 027 561 7332
Email address: mndregistry@adhb.govt.nz
Website: www.mnda.org.nz/registry/