A network of notifiers across Northern Ireland inform 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
We participate in two formal collaborative networks called the United Kingdom Collaboration of Cerebral Palsy Registers (UKCP), involving five registers in the United Kingdom and the Surveillance of Cerebral Palsy in Europe project (SCPE) involving sixteen centres across Europe. One of the aims of these networks is to monitor trends in the prevalence of cerebral palsy over time and by severity and other variables (e.g. birthweight, gender, area of birth). Consequently both collaborations have pooled anonymised data on children with cerebral palsy to form large, standardised datasets between five registers at UKCP level; and between fourteen centres at SCPE level. A working group within SCPE has developed a Reference and Training Manual on CD-ROM. 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. The CD is also a useful resource for teaching professionals working with children with cerebral palsy. Please contact the Registry Office if you would like to find out more.