Rare Diseases: Children
The question
To ask the Secretary of State for Health and Social Care, how many children were born with rare diseases as identified by the National Congenital Anomaly and Rare Disease Registration Service in each of the last ten years.
Answered by Mrs Sharon Hodgson
The National Congenital Condition and Rare Disease Registration Service (NCARDRS), part of the National Disease Registration Service (NDRS), was established in 2015 and collects data on individuals with congenital and rare conditions in England. There are over 7,000 known rare diseases, many of which present after birth rather than at delivery, and for this reason the NDRS does not produce an annual count of ‘children born with rare diseases’.
The NDRS does publish official statistics on the birth prevalence of congenital conditions for England, the vast majority of which are rare diseases, with further information available at the following link:
The following table shows NDRS reported national data for England on the number of children born with rare diseases as identified by the NCARDRS for the past five years, covering births between 2018 to 2022:
Year | Number of live births with at least one congenital condition | Live birth prevalence of at least one congenital condition per 10,000 live births |
2022 | 10,856 | 188.1 [95% CI 184.6-191.7] |
2021 | 10,119 | 169.2 [95% CI 165.9-172.5] |
2020 | 9,763 | 166.3 [95% 163.0 -169.6] |
2019 | 9,770 | 159.5 [156.3-162.7] |
2018 | 9,836 | 157.2 [154.1-160.3] |
Although the reported live birth prevalence of congenital conditions appears to increase over time, this pattern is most likely due to continued improvements in national dataflows, case ascertainment, and completeness as the NCARDRS matures, rather than a genuine rise in the underlying prevalence of these conditions.
The NDRS also publishes prevalence estimates for certain rare conditions where data completeness permits, with further information available at the following link:
https://digital.nhs.uk/ndrs/data/data-outputs/rare-condition-registration-statistics
We are continuing to expand and standardise national rare disease registration in England through the introduction of the national Rare Disease Data Set, which is available at the following link:
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