Project Title

Northern Ireland Cerebral Palsy Register (NICPR)

Research Focus:

Maternal and CHild Health 

Funder & Dates

Public Health Agency (previously Department of Health & Social Services), 1992-present

Perinatal Society, 1991

Principal Investigator or Primary Supervisor (if PhD project)

 Dr Oliver Perra and Dr Claire Kerr (Co-PIs)

Co-Investigators or additional supervisors

Research Fellow(s) or PhD Student

Dr Karen McConnell (Research Fellow)

Ms Mary-Elaine McCavert, PhD Student

Name & Institution of Collaborators

Surveillance of Cerebral Palsy in Europe (SCPE)

Name of External Partner Organisations

All Health and Social Care Trust’s in Northern Ireland

Description of Project

The Northern Ireland Cerebral Palsy Register (NICPR) is a confidential record of children with cerebral palsy born in Northern Ireland since 1977 or living in the area since 1992.

The overall aim of the NICPR is to establish a systematic approach to the monitoring and surveillance of cerebral palsy in Northern Ireland over time and to support research into the condition. The programme of research includes investigating the aetiology (causation) of the condition, clinical aspects of cerebral palsy, and health and social care services for children, young people and their families. 

The NICPR collects patient information including child’s name, address of residence, date of birth, type and severity of movement problems, presence of any other problems (seizures, learning, speech and language, vision and hearing), birthweight, gestation, if the child was a singleton or multiple birth (e.g. twin, triplet), postcode at birth, schools attended, professionals seen and child’s G.P.

The information on the NICPR is used to produce reports, published papers in scientific journals, presentations and to generate local information for the purposes of service development including parent support groups and voluntary agencies. 

Associated with the project.

Dr Claire Kerr, Heather Knox, NICPR Administrative Assistant, Dr Oliver Perra, Dr Karen Mc Connell

Add links/URLs to external pages, e.g., study webpage, reports, publications etc.

Northern Ireland Cerebral Palsy Register website

Involvement with NIHR Draft Standards for Public Involvement in Research

Any other relevant information