A network of notifiers across Northern Ireland informs the NICPR of children and young people with cerebral palsy on a monthly basis. This reporting system is now well established and includes senior/clinical medical officers (S/CMOs), paediatricians, neonatologists, orthopaedic surgeons, paediatric physiotherapists and parents among others. Searches of routine information systems, special school admission lists and hospital in-patient and outpatient records are carried out regularly. Death certificates are used to identify the relatively small number of children who were eligible for inclusion on NICPR but who died before the register began in 1991 or before they were notified to NICPR.
National and International Activities
In the past, we have collaborated with a national network called the United Kingdom Collaboration of Cerebral Palsy Registers (UKCP), which involved five registers in the United Kingdom. Two of the five Registers remain active, one in Newcastle-upon-Tyne and the NICPR here.
A second collaborating network which has continued its work of monitoring CP is the Surveillance of Cerebral Palsy in Europe project (SCPE) involving 20 centres across Europe, including the NICPR. One of the aims of the SCPE network is to monitor trends in the prevalence of cerebral palsy over time and by severity and other variables (for example, birthweight, gender, area of birth). Additionally, working groups in SCPE have developed a Reference and Training Manual available on their website. Using video clips and case histories, the aim of this manual is to develop diagnostic accuracy and standardisation in the assessment and description of children with cerebral palsy. SCPE working groups have also produced informaiton regarding the classification of neuroimiging findings and communication ability, inequalities by socio-economic status in health care access and in health outcomes across Europe in children with CP.