Short notes on Registry methods
Children are ascertained from multiple sources across Northern Ireland including paediatricians, neonatologists, orthopaedic surgeons, physiotherapists, parents and includes active searches of schools, hospital in- and outpatient records and death certificates.
Children are assessed ideally at age 5 years and once validated by the Registry Paediatrician are recorded on NICPR which includes a broad description of their impairments and some basic birth information.
Young children (under the age of 5 years) are likely to be unascertained as not all children will be diagnosed yet so data on young children must be interpreted with caution.
The following data relates to an assessment of the child's clinical presentation and abilities at age 5 years. NICPR is essentially a cross-sectional, epidemiological survey and we do not routinely follow up the children over time. However, we have designed separate research studies (described on this site) which are dedicated to finding out more about outcomes in the children, young people and increasingly, adults with cerebral palsy.