Question 1

Who will be eligible to participate in the Lighthouse II trial?

Accepted Answer

For clients to be eligible they must be on the NZ MND Registry, reside in one of the four site locations – BOP, Wellington, Christchurch and Dunedin and meet the inclusion criteria set by the trial. The NZ MND Registry will contact those eligible directly to see if they would like to participate, with the expectation that there will be approximately 5 clients enrolled from each each site.

To join the NZ MND register visit here

The inclusion and exclusion criteria can be found here: https://clinicaltrials.gov/ct2/show/NCT05193994

NB. MND New Zealand is sponsoring the New Zealand arm of this trial but is not involved in screening or selecting participants or any of the clinical aspects behind this trial.

Question 2

Why are there only 4 sites?

Accepted Answer

Each site needs a neurologist and a research nurse available to run the trial. The number of sites is limited to those locations that have staff currently available to run the trial.

Question 3

Why are there only 20 participants?

Accepted Answer

As this is the first time New Zealand has collaborated in a large international trial, and with a limited number of research staff available, the research team has needed to restrict the number of participants to ensure that the trial is conducted safely and effectively.

One of the important legacies of this first international trial will be establishing systems and processes that can be applied and expanded to accommodate larger trials in the future.

Question 4

Where can I learn more about this Trial?

Accepted Answer

Further information about the trial will be shared on our website in the coming weeks, but the most important first step clients can take is to sign up to the NZ MND Registry so they can be considered against the trial’s inclusion/ exclusion criteria.

The following links provide further background on this international trial:

Lighthouse Project shines a beacon on HERVs and their role in ALS - MND Research Blog

Triumeq | MND Association

Triumeq in Amyotrophic Lateral Sclerosis - Full Text View - ClinicalTrials.gov

Question 5

What do I do if someone wants to join the Registry?

Accepted Answer

For further information or to join the New Zealand Motor Neurone Disease Registry, they can contact the Registry Curator, Dympna Mulroy, via email MNDregistry@adhb.govt.nz or phone on 0800 MND REG (0800 663 734).

Alternatively, they can visit our website here and sign-up for the registry online by completing the participant information consent form.

Question 6

How can I find out about research that is happening in New Zealand?

Accepted Answer

The MND Research Network has a list of research that is taking place in New Zealand here.

Question 7

How do clients access clinical trials in New Zealand?

Accepted Answer

In order to get onto a clinical trial in New Zealand a person with MND must be registered with the New Zealand Motor Neurone Disease Registry. This is a separate process to joining MND New Zealand. The role of the Registry is to connect people with MND to research trials that they are eligible for.

Some clinical trials are targeted at people whose MND is believed to be driven by mutations in a particular gene eg SOD-1 or C9orf72. People with MND may want to discuss genetic testing with their Specialist or consider participating in the University of Auckland MND Genetics study by registering with The New Zealand MND Registry. Be aware that some genetic therapies are not currently available in New Zealand.

Question 8

What if I have questions?

Accepted Answer

Please contact Dr Claire Reilly, MND New Zealand Community & Research Advisor, at claire.reilly@mnd.org.nz

As the trial progresses and further information comes to hand, it will be shared directly with Team MND members or publicly via our website, social media channels and other communication processes.

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