UK-based Cambridge biotech Sano Genetics has launched Light the Way in the UK, an online support platform offering genetic testing for people suffering from 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 damages 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 sign up for the platform’s testing initiative will be set up with a genetic counselor to discuss whether testing is right for them. Participants who choose to be tested will then receive a non-invasive saliva-based DNA test kit to use at home.
Program participants will continue to receive genetic counseling in addition to 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 well-being over a nine-month period. Sano Genetics said it will use the data obtained to gain insight into the psychological impact of learning about genetic MND risk, as a tool to inform policy and practice.
According to Dr Paul Wicks, vice president of neuroscience and scientific advisor on Light the Way at Sano Genetics, the new program will improve the ability for those with MND, or their families, to find studies and research evidence and manage risk and news Theirs. to discover that they may carry a critical genetic variant.
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“If people aren’t aware they have the variant, they can’t access new treatments,” Wicks said. “As more therapies are developed, the need to offer testing to these individuals is more important than ever.”
With the program already launched in the US, Light the Way is supported by UK government body Innovate UK and partners including the UK’s MND Research Institute.
Elsewhere in ALS, PathMaker Neurosystems recently secured $2.16 million 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 through pads on the skin.
There are currently 99 marketed drugs for motor neuron diseases, with 940 pipeline drugs in various stages of development globally, according to GlobalData’s pharmaceutical pipeline database.
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