Haemochromatosis: Diagnosis
The question
To ask the Secretary of State for Health and Social Care, what change has there been in diagnosis rates for genetic haemochromatosis during the past three years.
Answered by Dr Zubir Ahmed
NHS England requires the NHS Genomic Laboratory Hubs (GLHs) to report Patient Level Contract Monitoring data, to understand capacity and activity volumes, to ensure that they deliver a comprehensive testing offer. As of December 2023, National Health Service genomic testing activity data has been published on the NHS England website, at the following link:
https://www.england.nhs.uk/statistics/statistical-work-areas/genomic-testing-activity/
NHS England is continuing to work with the NHS GLHs to develop this dataset, including routinely reporting outcome data, to understand changes in diagnosis rates. The most recent data between 2024/25 and 2025/26 shows that the diagnosis rates for genetic hemochromatosis have been consistent. Work is ongoing to improve the quality of this outcome data, including the reporting requirements and improving the informatics systems that support the data collection.
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