The Northern Ireland Cerebral Palsy Register (NICPR)

• Research type

  Research Database

• Full title

  The Northern Ireland Cerebral Palsy Register (NICPR)

• IRAS ID

  134751

• Research summary

  The Northern Ireland Cerebral Palsy Register (NICPR)

• REC name

  HSC REC B

• REC reference

  13/NI/0159

• Date of REC Opinion

  14 Oct 2013

• REC opinion

  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 or living in the area since 1992. 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 voluntary and parents and people with CP can ‘opt out’ or change their minds about taking part at any time but this is rare.
  The information collected includes the child’s name, address, date of birth, sex, health & care number, school as well as clinical information about their cerebral palsy (e.g. type, severity, learning, vision, hearing, communication, epilepsy), some basic birth details (e.g. birthweight, gestation, if a multiple birth) and professionals known to them. Information about named individuals is strictly confidential and only shared with a clinician directly involved in the child’s care. The NICPR is used to monitor the number and needs of children with CP over time, to inform service planning and carry out further research into causation and improving care and services. Individuals are never identified in any reports or papers produced.

• Research programme

  One of the purposes of NICPR is as a sampling frame for further research studies although information about named individuals is never released to researchers and children are approached by clinicians known to them. The NICPR has been incorporated into a large programme of funded research worth over £5 million and has supported a number of research training fellowships. We have reported on risk factors including the relationship with deprivation, prematurity and inappropriate fetal growth and we have studied life expectancy and risk factors for early mortality. 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 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. This study will provide important evidence about aspects of care associated with more or less successful transition experiences for young people.

• Research database title

  The Northern Ireland Cerebral Palsy Register (NICPR)

• Establishment organisation address

  Research and Enterprise Directorate

  63 University Road

  Queen’s University, Belfast

  BT7 1HF