Motor Neurone Disease
The question
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure equitable access to genetic testing for people with motor neurone disease.
Answered by Dr Zubir Ahmed
Genomic testing in the National Health Service in England is provided through the NHS Genomic Medicine Service (GMS). Testing is directed by the National Genomic Test Directory, which sets out the eligibility criteria for patients to access testing.
Genomic testing for adult-onset neurodegenerative disorders is included in the Test Directory under specific clinical scenarios including amyotrophic lateral sclerosis, the most common type of motor neurone disease. The Test Directory is routinely reviewed to ensure that genomic testing continues to be available for all patients for whom it would be of clinical benefit, while delivering value for money for the NHS. The directory and associated supporting material are available at the following link:
https://www.england.nhs.uk/publication/national-genomic-test-directory-supporting-material/
The strategic and systematic embedding of genomic medicine in end-to-end clinical pathways and clinical specialities is supported by a network of seven regional NHS GMS Alliances, which play an important role in achieving equitable access to standardised end-to-end pathways of care, including genomic testing, clinical genetics, and genetic counselling services.
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