Hereditary Diseases

(asked on 3rd November 2025) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether any NHS trusts (a) collect and (b) are required to collect data on (i) child and infant mortality, (ii) congenital anomalies and (iii) other health outcomes attributable to parental consanguinity.


Answered by
Zubir Ahmed Portrait
Zubir Ahmed
Parliamentary Under-Secretary (Department of Health and Social Care)
This question was answered on 26th November 2025

The responsibility to collect and report child deaths is held by the commissioning authority and local authorities’ Child Death Overview Panels (CDOPs), not National Health Service trusts. The Child Death Review statutory guidance requires NHS trusts to provide CDOPs with information to review a child’s death. This is done on an individual basis from the child's medical records and not from centrally held data within the NHS trust.

CDOPs and the National Child Mortality Database (NCMD) cannot comment on “other health outcomes attributable to parental consanguinity” because the CDOP process only applies to live born children who die before their 18th birthday.

The NCMD are preparing a thematic review of deaths to be published in 2026, which will report on the percentage of child death reviews that are attributed to chromosomal, genetic, and congenital anomalies, identifying consanguinity as a contributing factor.

Reticulating Splines