Find out more about the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS) - one of the 2 disease registration services within the National Disease Registration Service (NDRS)
The National Congenital Anomaly and Rare Diseases Registration Services (NCARDRS) is one of 2 disease registration services within the National Disease Registration Service (NDRS).
NCARDRS records people with congenital anomalies and rare diseases across the whole of England.
This registration service:
provides a resource for clinicians to support high quality clinical practice
supports and empowers patients and their carers, by providing information relevant to their disease or disorder
provides epidemiology and monitoring of the frequency, nature, cause and outcomes of these disorders
supports all research into congenital anomalies, rare diseases and precision medicine including basic science, cause, prevention, diagnostics, treatment and management
informs the planning and commissioning of public health and health and social care provision
provides a resource to monitor, evaluate and audit health and social care services, including the efficacy and outcomes of screening programmes
NDRS has expanded congenital anomaly and rare disease registration to cover the whole population of England. This is to meet national requirements for high quality public health disease surveillance identified by the Chief Medical Officer.
One in 50 babies is born with a congenital anomaly. This is the term used to describe conditions such as cleft palate, spina bifida and Down’s syndrome.
Congenital anomalies are defined as being present at delivery, originating before birth. They include structural, chromosomal and genetic anomalies. Screening during pregnancy can detect some congenital anomalies, while some are found at birth. Others are detected as a baby grows older.