Update: the Lighthouse II clinical trial has been stopped early, following a planned interim analysis. The analysis found that the treatment being investigated, Triumeq, did not show the level of benefit hoped for in slowing the progression of motor neurone disease (MND).
Motor neuron disease (MND) is a progressive neurodegenerative disorder of the nerves responsible for muscle control. Muscles progressively weaken leading to disability and eventually death.
Amyotrophic lateral sclerosis (ALS) is the most common form of MND. Symptoms may begin in an arm or leg, or in the muscles that control speech and swallowing. Motor neurone disorders are often diagnosed with the help of nerve conduction studies and electromyography (EMG). In most cases MND is sporadic and the cause is unknown. 1 in 10 patients may have a genetic or inherited form of MND, and a small number of patients without a family history may also have a genetic cause.
There are very few effective medications for MND. Only riluzole is approved and funded for the treatment of MND in New Zealand. Riluzole is not a cure but it may slow the progression of the disease.
New Zealanders with MND will soon have access to an international clinical trial. The Lighthouse II trial looks at whether human endogenous retroviruses (HERVs) play a role in MND, and whether targeting HERVs with anti-retroviral medication (Triumeq) might help people with MND. Funding for the trial has been provided by MND New Zealand and the Neurological Foundation.
MND New Zealand also funds the New Zealand MND Registry which connects patients with MND with international research opportunities. To register with the New Zealand MND Registry click here.
