Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to (a) improve data collection and (b) integrate indicators related to (i) parental consanguinity and (ii) genetic risk into future (A) public health strategy and (B) NHS resource allocation frameworks.

The National Disease Registration Service (NDRS) in NHS England is directed by my Rt Hon. Friend, the Secretary of State for Health and Social Care to collect data and report on the prevalence of cancer, and congenital and rare conditions in England, and this includes genomic data where available. NDRS publishes official national statistics on the birth prevalence of congenital conditions in England, presented by geographical region and stratified by the presence or absence of a known genomic cause. Parental consanguinity is a data item within the NDRS congenital conditions dataset, but reporting remains incomplete across many data providers. As a result, the data is insufficient to support routine reporting on the birth prevalence of congenital conditions in consanguineous families. NDRS is working with hospital trusts to continually improve the quality and completeness of data. Other relevant initiatives include the Born in Bradford study, which provides valuable insights into congenital conditions and associated risk factors, including consanguinity, in a defined population. Further information on the NDRS is available at the following link:

https://digital.nhs.uk/ndrs/