06/10/2026
https://www.facebook.com/share/1C5FNfCZsh/
We've spoken alot about the NICOR CHD PPD detection rates (procedures with prenatal diagnosis). We have tried to source more data through NHSE and even appealed to the ICO and GRC in pursuit of this. It's hard for us to tell what data actually exists.
The Tiny Tickers website explains more about the limitations of PPD detection rate data;
"The National Institute for Cardiovascular Outcomes Research (NICOR) collates data relating to antenatal diagnosis of congenital heart defects. Currently, their data set is limited to patients treated by surgery or intervention in the first year of life – meaning it is not an overall antenatal detection rate as it doesn’t include terminations; deaths during pregnancy or peri-natal deaths; conditions that don’t require treatment in the first 12 months; cases detected post-12 months; or instances where intervention is decided against due to the complexity of the patient’s condition(s).
However, this is the best data available at this time, and provides a strong indication of antenatal rates in our nations and regions."
We recently signposted to an October 2025 publication in the BMJ. This report concluded
"Most studies of CHD report only on babies who undergo intervention, which creates bias."
WHAT THIS STUDY ADDS
"In England (2018–2020), nearly two-thirds of
CHD cases were detected before birth, rising to
over 90% for the most complex conditions."
"Registries and quality improvement efforts
should include all CHD cases to provide a
complete picture and guide counselling, service
planning and policy."
We don't know why six year old data is being referenced here. It seems to us that the detection rate data held is fragmented, incomplete (or outdated) and lacks co-ordination... preventing improvements in services. In 2026 the "complete picture" should really be known and available to practitioners and families. It seems we have a lack of consistency and transparency that is preventing meaningful assessment and comparison between trust practices and outcomes. We shouldn't have to settle for the "best data available at this time" or "biased" and disconnected studies. We still remain gobsmacked that no organisation supposedly knew of trust record retention practices throughout England until we sent off our FOI requests.
20 week scans are being performed and cardiac views are being observed routinely - trusts just need to capture them. Nobody is suggesting otherwise now and 57% of trusts can seemingly manage it.
The burning question for us remains; Is there any correlation between trust record retention practice at the 20 week scan and CHD detection rates?
