In the early 1990s it was unclear how many people in Northern Ireland had cerebral palsy. In addition there was little information about how many people were likely to develop cerebral palsy and what their service and support needs might be. Around that time the Department of Health and Social Services agreed to fund the formation of Northern Ireland Cerebral Palsy Register (NICPR).
The overall aim of the NICPR was to establish a systematic approach to the monitoring and surveillance of cerebral palsy in the Northern Ireland population 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 and young people and their families. The Register provides a sampling frame for this type of research as well as a mechanism for surveillance of the condition over time.
The Register is currently funded by the Public Health Agency. Prior to this the four area Health and Social Services Boards of Northern Ireland provided financial support. The Register’s pilot year (in 1991) was funded by the Irish Perinatal Society. We are grateful to all current and past funders.
The Register is governed by an Advisory Comittee which usually meets once a year in January. The Advisory Committee provides guidance on both the conduct of the Register and the direction of research into children and young people with cerebral palsy. The Committee includes representatives from the Public Health Agency, each of the five Health and Social Care Trusts, senior clinicians and a parent representative. Copies of the approved minutes from the meetings are available on request.
The NICPR has ethical approval obtained from the Queen’s University Ethics Committee (application number 263/90; plus an amendment in 1997); the Office of Research Ethics Northern Ireland (in 2013).