Skip to main content

Internationally-renowned Welsh childhood anomaly register celebrates 25 years of helping to improve services

Published: 13 November 2023

A clinician who works with babies and children with severe hip dysplasia has praised Public Health Wales’ CARIS project, which collects data on congenital anomalies in Wales and is celebrating 25 years of operation. 

Dr Clare Carpenter, an orthopaedic surgeon in the Cardiff and Vale University Health Board with a long career in helping babies and children with hip problems, said that CARIS – the Congenital Anomaly Register and Information Service – has been instrumental in developing clinical services and a support network for patients and their families. 

“I’ve been working in orthopaedics for many years and have seen the difference that the CARIS register has made in the way that we shape our clinical offering for babies and children with hip dysplasia and their families.” 

“The richness of the data that CARIS monitors has meant that we can identify those individuals who are at higher risk of the condition, and offer them risk assessments and ultrasound scanning so that clinical services such as surgery and physiotherapy, as well as support networks, can be put in place.” 

CARIS provides reliable data on all congenital anomalies in Wales, such as heart defects, cleft lip and palate and hearing loss.  It was founded in 1998 and has expanded to include childhood rare diseases like Kawasaki disease, Behcet’s disease and Perthes disease. 

The data is used to assess patterns of anomalies, identify possible clusters and their causes and helps healthcare leaders ensure that their services like antenatal screening are working most effectively for people in Wales. 

Dr Carpenter added: “The work that we do with the team at CARIS is vitally important as it means that what is happening ‘on the ground’, which can be nuanced and complex, is reflected to policy makers when services are being designed.” 

Dr Margery Morgan, a Consultant Obstetrician working in Singleton Hospital, Swansea, was one of the team who worked to establish the register in 1998, and has been instrumental in its development and success over the past 25 years. 

Dr Morgan said “CARIS has been one of the success stories in healthcare in Wales over the past quarter of a century, and is the result of collaborative working between the CARIS team, the Observatory and Cancer Analytical Team (OCAT) at Public Health Wales, and clinicians and healthcare staff across Wales. 

“It has developed into a vital tool informing clinicians in Wales who work to provide services for expectant mothers, babies and families.” 

As part of the 25th anniversary celebration, the annual official statistics for CARIS 2022/23 are released. 

The data update are delivered in three tables, and include: 

• congenital anomaly data 

• childhood rare diseases data 

• antenatal detection rates. 

Congenital anomaly data show that in 2022, 4.8 per cent of all births in Wales were affected by a congenital anomaly. 84.7 per cent of babies affected by a congenital anomaly were liveborn, with 96.9 per cent of these surviving to one year of age. Of those with a recorded gender, 59.2 per cent were male. These proportions remain similar to those reported previously. 

For childhood rare diseases, counts and prevalence data are reported for over 260 different rare diseases and are categorised according to aetiology, or cause. For example, the most commonly reported genetic condition was cystic fibrosis with 322 reported cases equating to a prevalence of 3.97 per 10,000 live births. 

In addition to the headline summaries provided above, the data tables and outputs that form the official statistics release are available here.