Cambridge, UK- based biotech Sano Genetics has launched Light the Way in the UK, an online support platform offering genetic testing for people suffering with motor neurone disease (MND) or with a family history of the condition.
Amyotrophic lateral sclerosis (ALS) is the most common form of MND, which is a neurological condition that gradually impairs the nervous system, leading to progressive loss of voluntary movement and death. According to the Motor Neurone Disease Association, inherited MND affects up to one in 10 people with MND.
Individuals who register for the platform’s testing initiative will be placed with a genetic counsellor to discuss whether testing is right for them. Participants that choose to be tested will then receive a non-invasive, saliva-based DNA test kit to use at home.
The programme’s participants will continue to receive genetic counselling alongside support from peer networks and will be provided with updates on appropriate research opportunities as they arise.
Participants will also be given the opportunity to take part in an observational research study in which they will periodically self-report on their wellbeing over a nine-month period. Sano Genetics said it will use the data obtained to gain insight into the psychological impact of learning about the risk of genetic MND, as a means of informing policy and practice.
According to Dr Paul Wicks, vice president of neuroscience and scientific advisor on Light the Way at Sano Genetics, the new programme will improve the ability for those with MND, or their families, to find research studies and trials and manage their risk and the news of finding out they might carry a critical genetic variant.
“If people aren’t aware they have the variant, they can’t access emerging treatments,” said Wicks. “As more therapies are developed, the need to offer testing to these individuals is more important than ever.”
With the programme having already launched in the US, Light the Way is backed by UK government body Innovate UK and partners including the UK MND Research Institute.
Elsewhere in ALS, PathMaker Neurosystems recently secured $2.16m from the US Department of Defense (DoD) to fund a clinical trial using its MyoRegulator investigational device to treat people with ALS.
The French company’s device works by suppressing motor neuron hyperexcitability via pads on the skin.
There are currently 99 marketed drugs for Motor Neurone Diseases, with 940 pipeline drugs at various stages of development globally, as per GlobalData’s pharmaceutical pipeline database.
