Information for Notifiers
Notifiying to NICPR
At the end of each month a yellow report card (as shown here) is sent out to approximately 100 health care professionals across Northern Ireland. Professionals are asked if they have seen a 'new' child (ie. newly diagnosed or newly referred) with suspected or definite cerebral palsy during the last month. Professionals are asked to return the card even if they have nothing to report.
Assessment forms (booklet)
Children and young people notified to the NICPR are followed up with a standardised assessment form presented as a yellow booklet (shown here). Clinicians and epidemiologists designed the assessment form for the specific purpose of reporting motor impairment of central origin (Evans et al 1989). The standardised assessment form is primarily an epidemiological tool.
The assessment form includes information about abnormal tone and unwanted movements (type and distribution), oral-motor involvment (articulation of speech, swallowing problems, drooling/dribbling), head and neck and trunk control, lower and upper limb involvement, information about the medical diagnosis and presence and severity of associated impairments (intellect, communication, seizures, vision and hearing) and some birth history (birthweight, gestation and number born).
Information Leaflet for Parents and Carers
Consent procedures are currently under review by the DHSSPS and the Advisory Committee to the NICPR. We encourage good practice among notifiers to keep families informed about the NICPR and have developed information materials for parents. The information leaflet was compiled with the help and approval of the Advisory Committee including taking account of the views and comments of a parent representative. Any comments professionals or parents might have about the leaflet, particularly about how it could be improved would be gratefully received (email firstname.lastname@example.org).
Decision & Classification Trees for Cerebral Palsy
Part of the work of Surveillance of Cerebral Palsy in Europe (SCPE) has been to develop two decision trees to help ensure a systematic approach is taken towards (i) confirming the eligibility of children on CP registers and (ii) classifying children by their clinical subtype. These decision trees are reproduced here with the kind permission of Dr Christine Cans (Co-ordinator, SCPE).