Research projects

Lighthouse II phase 3

MND New Zealand is proud to have been able to contribute funding to secure access to Lighthouse II, an international clinical trial looking at whether human endogenous retroviruses (HERVs) play a role in motor neurone disease.

This trial is the first-ever phase 3 clinical trial to be offered to people with MND in New Zealand, across multiple locations.

Research teams in Bay of Plenty, Wellington, Christchurch and Dunedin have elected to participate in this trial. There are 20 places (approximately 5 per centre) available for MND New Zealand clients. Dr Alan Stanley, Hawkes Bay neurologist and MND New Zealand Council member will be the New Zealand Principal Investigator for this trial.

To be eligible for this trial, participants 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 Lighthouse II Project will investigate whether targeting HERVs with anti-retroviral therapy might slow disease progression in patients with MND/ALS. HERVs are ancient viruses that have left their genetic material in our DNA during the human evolution. In some people, this old genetic material may become activated and is believed to be a cause of MND.

Phase 2 of the Lighthouse Trial showed that Triumeq could suppress this genetic reactivation and may slow disease progression in patients with ALS. Triumeq is a drug that is used to treat patients with the human immunodeficiency virus (HIV) and is shown to be safe and well tolerated in patients with ALS. You can read more about this phase of the trial here.

Phase 3 also called Lighthouse II, will be a randomised, double-blind, placebo-controlled study. This means that participants will be randomly allocated to receive a treatment with either Triumeq or a placebo (dummy drug). Phase 3 of Lighthouse II is expecting to enroll 390 participants worldwide, with participants taking Triumeq (or placebo) for a maximum of 24 months. Of the 390 participants worldwide, 20 of these participants will be MND patients from New Zealand.

We strongly encourage all people with MND who wish to be considered for this trial and future opportunities to enrol with the NZ MND Registry as soon as possible before the end of August.

If you have already enrolled with the Registry you don’t need to enrol again. 

To register online, please complete the participant NZ MNDR Consent and contact details form or contact the Registry Curator, Dympna Mulroy by email or phone on 0800 MND REG (0800 663 734).

Frequently Asked Questions