Innovate UK awards Sano Genetics £330,000 grant for ALS study

2023-08-04

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Innovate UK awards Sano Genetics £330,000 grant for ALS study

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来源: PMLiVE

Innovative UK has awarded Sano Genetics a £330,000 grant for its project investigating ways to support at-risk families of patients with genetic forms of motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS).

Welcomed by the MND Association, the ‘Light The Way’ project aims to improve the outlook for people living with ALS and those who are at risk of developing the disease, for which there is currently no cure and an 18 to 24-month median prognosis.

ALS is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle control.

The new funding will cover the recruitment of around 1,000 US and UK participants, 200 of whom are expected to opt in for genetic sequencing.

Through a psychological distress study called Beacon, the platform will chart the psychological impacts of living with a genetic predisposition to ALS.

Serious illnesses can cause significant stress, panic and uncertainty for people. However, there has been little effort to reduce those effects and look at ways to support those affected.

Sano’s chief executive, Patrick Short, said: “Because [ALS is] such a devastating condition, researchers and healthcare professionals are concerned about the psychological fallout of learning about a genetic predisposition."

He added: "Informally, some clinicians report that having conversations with asymptomatic individuals or offering genetic counselling risks causing more harm than good and diverts resources away from treating diagnosed ALS patients in busy clinics."

Participants will self-report their feelings periodically for nine months, and Beacon will measure the degree of depressed mood, anxious mood, perceived worry about ALS and the reaction to the return of genetic testing results.

Sano will compare responses to those of a control group that either chose not to be tested or decided not to receive the results.

Participants will also have the opportunity to take part in new research studies as well as potentially take part in the testing of new therapies, including Biogen’s Qalsody (tofersen), the first therapy approved for a genetic form of ALS.

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