The Department, through the National Institute for Health Research (NIHR), commissions a range of research to improve neonatal health outcomes.

For example, The NIHR recently funded a project which investigated whether artificial intelligence (AI) could help to identify heart conditions in babies, before birth. The study found that AI assistance in the routine foetal anomaly ultrasound scan results in significant time savings, and a reduction in sonographer cognitive load, without a reduction in diagnostic performance.

In addition, the NIHR is currently funding a £2.68 million study to improve maternal and infant outcomes in pregnant women with epilepsy through early identification of women and their babies at risk of complications and ensuring timely specialist epilepsy input with evidence-based information on the risks-benefits of their treatment. This study will therefore assess the longer-term effects of newer anti-epileptic drugs on children’s development to inform pregnant women and promote safe anti-epileptic drug use.

The NIHR welcomes funding applications for research into any aspect of human health and care, including research on congenital conditions.

The 10-Year Health Plan addresses common causes of congenital anomalies including plans to address smoking, end the obesity epidemic, and tackle harmful alcohol consumption. The 10-Year Health Plan is available at the following link:

https://www.gov.uk/government/publications/10-year-health-plan-for-england-fit-for-the-future

The plan includes proposals for universal newborn genomic testing, subject to evidence from the Generation Study. This study is assessing the use of whole genome sequencing to screen 100,000 newborns for over 200 rare genetic conditions, with more than 15,000 families enrolled so far. Sequencing will complete by summer 2027, after which the findings will be evaluated and considered by the UK National Screening Committee. Subject to evidence and funding, genomic testing could be available to all newborns by 2035. The Saving Babies’ Lives Care Bundle includes evidence-based interventions to address common causes of congenital anomalies such as smoking, fetal growth restriction, preterm birth, and management of diabetes in pregnancy. Further information on the bundle is available at the following link:

https://www.england.nhs.uk/long-read/saving-babies-lives-version-3-2/

In addition, from December 2026, non-wholemeal wheat flour will be fortified with folic acid. It is estimated that this will reduce neural tube defect rates by approximately 20% in the United Kingdom. Further information is available at the following link:

https://www.food.gov.uk/safety-hygiene/folic-acid

Guidance on how to submit data about consanguinity and pregnancy to the Maternity Services Dataset is available at the following link:

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-sets/maternity-services-data-set/guidance/msds-consanguinity-data-quality-guidance

NHS England has published guidance on how to submit data about consanguinity and pregnancy to the Maternity Services Dataset (MSDS). The guidance is publicly available on NHS Digital’s website under “MSDS Consanguinity Data Quality Guidance”.

Since assuming responsibility for the registration of congenital and rare conditions in 2015, the National Disease Registration Service (NDRS) has focused on improving the accuracy of case completeness and strengthening regional coverage to monitor trends in congenital and rare conditions. NDRS is reviewing the data items recommended for reporting of congenital conditions, including which information should be collected through specialist congenital condition registration datasets and which is better captured for all pregnancies through the Maternity Services Data Set. NDRS has not assessed completeness of the consanguinity field at a provider level. NHS England is working to improve the recording of consanguinity. NDRS continues to work closely with reporting trusts, maternity services, and clinical teams to improve the quality and completeness of congenital condition data, supported by a dedicated data liaison function.

Since assuming responsibility for the registration of congenital and rare conditions in 2015, the National Disease Registration Service (NDRS) has focused on improving the accuracy of case completeness and strengthening regional coverage to monitor trends in congenital and rare conditions. NDRS is reviewing the data items recommended for reporting of congenital conditions, including which information should be collected through specialist congenital condition registration datasets and which is better captured for all pregnancies through the Maternity Services Data Set. NDRS has not assessed completeness of the consanguinity field at a provider level. NHS England is working to improve the recording of consanguinity. NDRS continues to work closely with reporting trusts, maternity services, and clinical teams to improve the quality and completeness of congenital condition data, supported by a dedicated data liaison function.

No, the Department is not planning to publish any estimates or research on the annual cost to the public purse for the National Health Service of treating congenital and genetic disorders arising from consanguineous unions. The Department does not hold this information and has no plans to collect this information.

NHS England has no current plans to publish aggregated consanguinity statistics collected through the Maternity Services Data Set. Through the Genetic Risk Equity project, the National Health Service is seeking to improve the quality of consanguinity data in nine pilot sites. There are no plans to integrate consanguinity indicators into wider national population health or genomics datasets.

Consanguinity can be recorded in the Maternity Services Data Set (MSDS) at any point in the maternity care pathway, by maternity services providers, including a relevant clinical code in the submitted MSDS record for an individual receiving maternity care. NHS England has published guidance for maternity services providers on preferred clinical codes to submit, and in which data tables. Only a small number of National Health Service trusts have recently submitted any of the consanguinity clinical codes to MSDS. An evaluation of the Genetic Risk Equity Project will include an analysis of the quality of the consanguinity data on MSDS.

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.

The Office for Health Improvement and Disparities supports the delivery of national and regional priorities for prevention and health inequalities across the regional system. The NHS Genomic Medicine Service delivers genomic testing, guided by eligibility criteria set out in the National Genomic Test Directory, including in cases where genetic disorders may be linked to consanguinity. In maternity and neonatal services, clinicians carry out individual risk assessments of the women and babies in their care, and this may include discussing risks relating to parental genetic conditions, including consanguinity. These services do not use Maternity Services Dataset (MSDS) data, which is population-level. NHS England has published guidance on how to submit data about consanguinity and pregnancy to the MSDS, but NHS England is not planning to publish further guidance.

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/

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/

The Department does not hold this information.

The information requested falls under the remit of the UK Statistics Authority.

A response to the Hon gentleman’s Parliamentary Question of 3rd October is attached.

The information requested falls under the remit of the UK Statistics Authority.

A response to the Hon gentleman’s Parliamentary Question of 3rd October is attached.

Debendox was originally available as a triple combination of doxylamine succinate, an antihistamine, pyridoxine hydrochloride, a form of vitamin B6, and dicyclomine hydrochloride, an antispasmodic. The product was later reformulated to remove dicyclomine hydrochloride following a review which concluded that dicyclomine did not contribute to the effectiveness of the other two ingredients. In the early 1980s, the medicine was available as a dual combination product, as doxylamine succinate and pyridoxine hydrochloride.

Since July 2018, the dual combination of doxylamine succinate 10 milligram and pyridoxine hydrochloride 10 milligram has been authorised as Xonvea, a safe and effective treatment for nausea and vomiting due to pregnancy in women who do not respond to conservative management, like changes in diet or other non-medicine treatments. As described in the product information for Xonvea, a large amount of data on pregnant women, including two meta-analyses with over 168,000 patients and 18,000 exposures to the doxylamine/pyridoxine combination during first trimester, indicates no malformative nor feto/neonatal toxicity due to doxylamine succinate and pyridoxine hydrochloride.

As with all medicines, the Medicines and Healthcare products Regulatory Agency will keep this issue under review and will carefully evaluate any new evidence which becomes available linking use of Debendox or Xonvea with adverse outcomes in pregnancy.

The Department has not made any recent assessments of the number of people exposed to Debendox and is not considering support or compensation.

Debendox was originally available as a triple combination of doxylamine succinate, an antihistamine, pyridoxine hydrochloride, a form of vitamin B6, and dicyclomine hydrochloride, an antispasmodic. The product was later reformulated to remove dicyclomine hydrochloride following a review which concluded that dicyclomine did not contribute to the effectiveness of the other two ingredients. In the early 1980s, the medicine was available as a dual combination product, as doxylamine succinate and pyridoxine hydrochloride.

Since July 2018, the dual combination of doxylamine succinate 10 milligram and pyridoxine hydrochloride 10 milligram has been authorised as Xonvea, a safe and effective treatment for nausea and vomiting due to pregnancy in women who do not respond to conservative management, like changes in diet or other non-medicine treatments. As described in the product information for Xonvea, a large amount of data on pregnant women, including two meta-analyses with over 168,000 patients and 18,000 exposures to the doxylamine/pyridoxine combination during first trimester, indicates no malformative nor feto/neonatal toxicity due to doxylamine succinate and pyridoxine hydrochloride.

As with all medicines, the Medicines and Healthcare products Regulatory Agency will keep this issue under review and will carefully evaluate any new evidence which becomes available linking use of Debendox or Xonvea with adverse outcomes in pregnancy.

The Department has not made any recent assessments of the number of people exposed to Debendox and is not considering support or compensation.

Debendox was originally available as a triple combination of doxylamine succinate, an antihistamine, pyridoxine hydrochloride, a form of vitamin B6, and dicyclomine hydrochloride, an antispasmodic. The product was later reformulated to remove dicyclomine hydrochloride following a review which concluded that dicyclomine did not contribute to the effectiveness of the other two ingredients. In the early 1980s, the medicine was available as a dual combination product, as doxylamine succinate and pyridoxine hydrochloride.

Since July 2018, the dual combination of doxylamine succinate 10 milligram and pyridoxine hydrochloride 10 milligram has been authorised as Xonvea, a safe and effective treatment for nausea and vomiting due to pregnancy in women who do not respond to conservative management, like changes in diet or other non-medicine treatments. As described in the product information for Xonvea, a large amount of data on pregnant women, including two meta-analyses with over 168,000 patients and 18,000 exposures to the doxylamine/pyridoxine combination during first trimester, indicates no malformative nor feto/neonatal toxicity due to doxylamine succinate and pyridoxine hydrochloride.

As with all medicines, the Medicines and Healthcare products Regulatory Agency will keep this issue under review and will carefully evaluate any new evidence which becomes available linking use of Debendox or Xonvea with adverse outcomes in pregnancy.

The Department has not made any recent assessments of the number of people exposed to Debendox and is not considering support or compensation.

Debendox was originally available as a triple combination of doxylamine succinate, an antihistamine, pyridoxine hydrochloride, a form of vitamin B6, and dicyclomine hydrochloride, an antispasmodic. The product was later reformulated to remove dicyclomine hydrochloride following a review which concluded that dicyclomine did not contribute to the effectiveness of the other two ingredients. In the early 1980s, the medicine was available as a dual combination product, as doxylamine succinate and pyridoxine hydrochloride.

Since July 2018, the dual combination of doxylamine succinate 10 milligram and pyridoxine hydrochloride 10 milligram has been authorised as Xonvea, a safe and effective treatment for nausea and vomiting due to pregnancy in women who do not respond to conservative management, like changes in diet or other non-medicine treatments. As described in the product information for Xonvea, a large amount of data on pregnant women, including two meta-analyses with over 168,000 patients and 18,000 exposures to the doxylamine/pyridoxine combination during first trimester, indicates no malformative nor feto/neonatal toxicity due to doxylamine succinate and pyridoxine hydrochloride.

As with all medicines, the Medicines and Healthcare products Regulatory Agency will keep this issue under review and will carefully evaluate any new evidence which becomes available linking use of Debendox or Xonvea with adverse outcomes in pregnancy.

The Department has not made any recent assessments of the number of people exposed to Debendox and is not considering support or compensation.

Debendox was originally available as a triple combination of doxylamine succinate, an antihistamine, pyridoxine hydrochloride, a form of vitamin B6, and dicyclomine hydrochloride, an antispasmodic. The product was later reformulated to remove dicyclomine hydrochloride following a review which concluded that dicyclomine did not contribute to the effectiveness of the other two ingredients. In the early 1980s, the medicine was available as a dual combination product, as doxylamine succinate and pyridoxine hydrochloride.

Since July 2018, the dual combination of doxylamine succinate 10 milligram and pyridoxine hydrochloride 10 milligram has been authorised as Xonvea, a safe and effective treatment for nausea and vomiting due to pregnancy in women who do not respond to conservative management, like changes in diet or other non-medicine treatments. As described in the product information for Xonvea, a large amount of data on pregnant women, including two meta-analyses with over 168,000 patients and 18,000 exposures to the doxylamine/pyridoxine combination during first trimester, indicates no malformative nor feto/neonatal toxicity due to doxylamine succinate and pyridoxine hydrochloride.

As with all medicines, the Medicines and Healthcare products Regulatory Agency will keep this issue under review and will carefully evaluate any new evidence which becomes available linking use of Debendox or Xonvea with adverse outcomes in pregnancy.

The Department has not made any recent assessments of the number of people exposed to Debendox and is not considering support or compensation.