Rare diseases cause around a third of infant deaths and are a major contributor to subsequent illness and disability.
Public Health England (PHE) has expanded congenital anomaly and rare disease registration to cover the whole population of England. NCARDRS was launched in April 2015 and exists to support clinicians, patients, researchers, service delivery, commissioners and public health.
Data are collected on all suspected and confirmed congenital anomalies and rare diseases identified in utero, at birth, in childhood or as an adult. Data are collected from multiple independent sources. We do not rely on individual case reports and accept data in the electronic format that is simplest for the notifier to supply, with the aim of keeping the burden on clinical time to a minimum. More information on how to notify is available here.
For more information go to NCARDRS website