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Headlines 15 “Previous research suggests that a virus belonging to a family of endogenous retroviruses, which resemble HIV, may be the cause or trigger in some people for ALS.” “New Zealand has an excellent track record of basic and clinical science research into MND with a number of world class researchers. However, this is the first time that people living with all types of MND have been able to join a clinical trial of a potential therapy.” The study team has put an incredible amount of effort into getting the trial up-and-running in New Zealand. “I’m very lucky to be so well supported by the MND research community,” says Dr Stanley. “People like Dr Emma Scotter and Associate Professor Richard Roxburgh have built a fantastic base and the MND New Zealand registry has been a very helpful initiative. I am privileged to be in a position to help take this forward and, hopefully, grow a clinical trials network.” Dr Stanley is donating his time as the National Coordinating Investigator. Consultant neurologists have been recruited to manage study participants out of existing MND clinics in Tauranga, Dunedin, Christchurch and Wellington, with Dr Stanley working out of Hastings. Participants had to be capped at 20 to make the study feasible. The group will be monitored for 24 months as they take the drug, which has already shown promising results in Phases 1 and 2 of the Lighthouse study, with an overall slowing in MND disease progression and mortality rates. Phase 3 is a much larger international cohort, and will introduce a placebo to the trial. Dr Stanley says it may seem like a leap for an HIV drug to cross over as a treatment for MND, however there is growing evidence that viruses may be an underlying cause of some neurological conditions. “Previous research suggests that a virus belonging to a family of endogenous retroviruses, which resemble HIV, may be the cause or trigger in some people for ALS.” he explains. ALS or amyotrophic lateral sclerosis, is the most common type of MND. “These viruses are ancient organisms that have been incorporated into our DNA over thousands of years.” If this study confirms Triumeq to be effective for MND it could be made rapidly available to patients. This is because the medication is already widely used for HIV and the individual components of the medication are available as generics. Phase 3 is typically the final stage before a drug is approved for market. “The primary objective of this study is to assess the efficacy of Triumeq versus placebo on overall survival, defined as death from any cause,” Dr Stanley says. “A number of secondary outcomes will also be assessed including the impact on daily functioning, quality of life, respiratory function and the time to advanced disease.” Study participants were due to begin the trial in February 2023. Dr Alan Stanley