The Northern Ireland Cerebral Palsy Register (NICPR) 2023
Research type
Research Database
IRAS ID
332438
Contact name
Oliver Perra
Contact email
Research summary
The Northern Ireland Cerebral Palsy Register (NICPR)
REC name
HSC REC B
REC reference
23/NI/0131
Date of REC Opinion
6 Dec 2023
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The Northern Ireland Cerebral Palsy Register (NICPR) is a confidential record of every child with cerebral palsy (CP), born in Northern Ireland since 1977. Children are notified to the Register usually by a health care professional involved in their care but sometimes by parents. Children are also identified from searching health and school records. NICPR is a voluntary register and parents and people with CP can ‘opt out’ or change their minds about taking part at any time.
The information collected includes the child’s name, date of birth, sex, health & care number, school as well as clinical information about their cerebral palsy (e.g., type, severity of motor impairment, likely cause of CP), information about birth (e.g. birthweight, gestational age, if a multiple birth), information about other impairments (e.g., intellectual delay) or related conditions (e.g. epilepsy). Information about named individuals is strictly confidential and only shared with a clinician directly involved in the child’s care.
Research programme
The overarching purpose of the NICPR is to provide comprehensive surveillance of the number and health profile of children with CP in Northern Ireland. The register is regularly used to investigate the needs of children with CP over time, to inform service planning. Furthermore, our programme of work covers research into aetiology, surveillance, and improvement of care and services. Individuals are never identified in any reports or papers produced. However, the NICPR can also be used to provide a sampling frame for further research studies, although information about named individuals is never released to researchers and children are only approached by clinicians known to them. The NICPR has been incorporated into a large programme of funded research and has supported a number of research training fellowships. We have also undertaken clinical studies investigating function, health and service use in ambulant (Locomotor Ability Study) and non-ambulant children with CP (the Lilac Study). We have investigated quality of life and participation in children aged 8-12 years (Sparcle Study) and again at 13-17 years (Sparcle 2) with eight regions of western Europe with the aim of making recommendations to the European Union about improving the environment in which children with CP grow up. More recently we have contributed to a large study of 14-17 year olds with CP transitioning from child to adult services in different regions of the UK.
Research database title
The Northern Ireland Cerebral Palsy Register (NICPR)
Establishment organisation
Queen's University Belfast
Establishment organisation address
University Road
Belfast
Northern Ireland
BT7 1NN