The National Congenital Anomaly and Rare Disease Registration Service
Last Reviewed 3/03/2016
By Charlotte McClymont
To celebrate World Birth Defects Day we asked the team at Public Health England to talk about the benefits that The National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) will bring to patients and families who are affected by rare diseases and congenital anomalies.
The 3rd of March is World Birth Defects Day and many families across the UK will be taking part in events to raise awareness of this important issue. Up to 1 in 20 babies in the UK are born with a birth defect (also known as a congenital anomaly) and congenital anomalies are one of the leading causes of perinatal and infant mortality. Babies that survive and live with these conditions often have long term disabilities and may have a shortened life span. For some congenital anomalies the cause is known, but for most there is no known cause, and it may be that they are caused by a number of factors.
NCARDRS was launched by Public Health England (PHE) on the 1st of April 2015, and now incorporates the regional congenital anomaly registers and the National Down Syndrome Cytogenetic Register (NDSCR). In those parts of the country where there was no data collection, new regional teams have been established meaning that, for the first time, we have 100% geographical coverage of congenital anomaly surveillance across England.
The national registration of these conditions and the collection of information about them is important for a number of reasons:
Data from the NCARDRS database will be used as a resource by patients, clinicians and researchers to advance our knowledge of congenital anomalies, their causes and methods of prevention. The data collected will be used to facilitate improvements in medical treatments, clinical care, and the development of better care pathways.
PHE can also use the data to carry out surveillance of congenital anomalies to look for trends, for example we can monitor changes in the number of babies born with congenital anomalies, or changes in the areas where they are born. This information can also be used to help NHS commissioners to plan and develop regional and national NHS services.
Collecting information about babies born with congenital anomalies is essential for monitoring the performance of antenatal and newborn screening programmes, ensuring that the most effective testing methods are offered to pregnant women and parents. Increasing our knowledge of congenital anomalies helps clinicians to provide improved counselling for women and their partners when considering screening tests, and enables health professionals to give more accurate advice to families about their chances of having a baby with a congenital anomaly.
In order to pool data across a wider geographical area and to share expertise, NCARDRS shares data on congenital anomalies with EUROCAT (European Surveillance of Congenital Anomalies), a European network of population-based registries for the epidemiologic surveillance of congenital anomalies.
The national registration of congenital anomalies through NCARDRS is made possible by the dedication of the many notifying clinicians in hospitals across the country, and by the families who agree to their, and their child’s, data being used in this way. Their contribution will help us to achieve our overarching aim of improving the knowledge, treatment and prevention of congenital anomalies, thereby improving the lives of all those affected by a congenital anomaly.