Hypertrophic Cardiomyopathy

(asked on 16th February 2024) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how many people were diagnosed with hypertrophic cardiomyopathy in (a) 2020, (b) 2021 and (c) 2022.


Answered by
Andrew Stephenson Portrait
Andrew Stephenson
Minister of State (Department of Health and Social Care)
This question was answered on 27th February 2024

Hypertrophic cardiomyopathy, along with other inherited cardiac conditions, is included on the National Genomic Test Directory. The directory sets out the eligibility criteria for patients to access testing, as well as the genomic targets to be tested, the method that should be used, and the healthcare professional that can request the test, including when a general practice can request testing. The directory also enables the testing of family members as part of cascade testing. A robust and evidence-based process and policy is in place to ensure that genomic testing continues to be available for all patients for whom it would be of clinical benefit. This is supported by a horizon scanning process and fast track application system to ensure the directory can respond quickly to emerging developments. Testing is available for all eligible patients across the whole of England. The National Genomic Test Directory is available at the following link:

https://www.england.nhs.uk/publication/national-genomic-test-directories/

On raising awareness, the seven NHS Genomic Medicine Service Alliances also play an important role in supporting the strategic and systematic embedding of genomic medicine in end-to-end clinical pathways and clinical specialities, supporting the achievement of equitable access to standardised end-to-end pathways of care, inclusive of genomic testing. They also support clinical genetics and genomic counselling services, as well as raising awareness among clinicians and the public of the genomic testing available through the National Health Service.

Furthermore, the 17 NHS Clinical Genomic Services, commissioned by NHS England, deliver a comprehensive clinical genomic and counselling service that directs the diagnosis, risk assessment, and lifelong clinical management of patients of all ages and their families who have, or are at risk of having, a rare genetic or genomic condition. The Department does not hold specific information on how many people were diagnosed with hypertrophic cardiomyopathy in 2020, 2021 or 2022, although hypertrophic cardiomyopathy is thought to affect 1 in 500 people in the United Kingdom. Further information is available at the following link:

https://www.nhs.uk/conditions/cardiomyopathy/

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