Update from the New Zealand Motor Neurone Disease Registry regarding COVID-19

In light of the most recent COVID-19 lockdown period, affecting Auckland and now lowering of alert levels again across the country, we want to let you know what we are doing in response to the current situation.

In March, plans were put in place to enable Registry staff to continue to work from home using Auckland Hospital’s secure computer environment. As a result, we were prepared when the second lockdown was announced. We acknowledge there was a delay in responding to some new participants during this phase and apologise if we are only replying to you now.

As we move down alert levels in New Zealand, the Genetic Screening in Motor Neuron Diseases has started recruiting again. As COVID-19 is still present at large in many other countries there is a delay in recruitment to other studies. Researchers are doing their best to ensure ongoing trials can continue with some having to adapt the process of gathering data and/or administrating treatment as necessary. We continue to remain in close contact with our research partners and will be promoting New Zealand as a potential research site given the country’s positive management of COVID-19.

We have seen an increase in people registering through our online registration and consent system. Please click here to register online. If you have any enquiries, or if you are unsure if you’ve registered please click here to send us an email.

We wish to assure you that our participants and the wider MND community will continue to receive support, which is an essential part of our relationship with you. Please stay safe, reaching out for help if you need it.

He waka eke noa – we’re in this together