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 the Northern Ireland Cerebral Palsy Register (NICPR).
The NICPR is part of the School of Nursing and Midwifery at Queen's University and it is located in Mulhouse Building, in the Royal Hospital ground.
The Registry collects patient information and it is responsible for the production of reports on CP incidence, prevalence and survival in Northern Ireland and provides evidence to help inform decision making about services such as community paediatric services, orthopaedic and physiotherapy services to name a few examples.
To find out more about what we do and how we work you may wish to open our patient information leaflet.
The overall aim of the NICPR is 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 objectives of teh NICPR are:
- Collect, analyse and store in an accurate and timely way, information about children with cerebral palsy using standardised methods for ascertainment and classification.
- Uphold patient and family confidentiality.
- Promote, facilitate and undertake research into the causes, prevention, treatments and outcomes for people with cerebral palsy. One of the main functions of NICPR is to act as a sampling frame for population-based studies which will include local, national and international research.
- Facilitate planning of specialist services for the prevention, diagnosis and care of individuals with cerebral palsy by providing up-to-date information about prevalence and the distribution of types and severities of cerebral palsy in the NI child population.
- Undertake and assist audits of treatments, services and outcomes for individuals with cerebral palsy and make recommendations for improvements where appropriate.
- Provide appropriate information on cerebral palsy for ad hoc queries.
- Promote professional and public awareness about cerebral palsy which will include web accessible data, information leaflets, local presentations and specialist conferences and workshops.
- Publish scientific reports and papers relating to cerebral palsy and present at national and international conferences.
- Link nationally and internationally through established networks of researchers, clinicians and academics to promote surveillance of the condition in a systematic way thus improving our understanding of opportunities for prevention, reduction in prevalence and/or severity and improvements in health and care.
These objectives are reviewed every year in collaboration with the Advisory Committee.
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 meets quarterly. 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.
Current committee members:
Dr Oliver Perra (NICPR Manager)
Dr Anna Gavin (NICPR Data Guardian)
Dr Guiomar Garcia Jalon (Research Fellow)
Dr Cliona Cummings (NICPR Consultant Paediatrician)
Dr Mary Jane Platt (NICPR Epidemiologist Consultant)
Dr Brid Farrell (Public Health Agency)
Ms Alix Crawford (User representative)
Dr James Hughes (Southern HSCT)
Dr Jayne Larkin (South-eastern HSCT)
Dr Gerry Mackin (Western HSCT)
Dr Jarleth McAloon (Northern HSCT)
Dr Mairead McGinn (Belfast HSCT)
Mrs Eileen Thomson (CEDAR foundation)
Confidentiality and Ethics
The Register requires information on the names and addresses of patients to prevent multiple registrations of the same patient, to calculate survival by linking with data on deaths, to allow follow up for treatments and other care and to facilitate the clinical genetics service. The Register is independent of all other agencies and must take responsibility to protect the confidentiality of patient data.
The Register is registered under Queen’s University Belfast with the 1998 Data Protection Act, (registration no: Z6833827) and its databases have been registered with the Northern Ireland Ethics Committees (ORECNI Reference ref 13/NI/0159). All confidential information within the Registry is protected by security systems and destroyed when no longer needed. No publication of results will enable any individual to be identified.