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. It is held at Queen’s University Belfast and funded by the Public Health Agency.
It is important to know about every child with cerebral palsy, even those with mild forms, particularly when researching the causes of the condition and trends over time. We would like to know about your child and find out more about your experiences. You can contact us directly to register your child or just find out more information. You can also discuss this with your child’s doctor or therapist.
The NICPR was founded in 1991 by Dr Jackie Parkes as it was unclear at that time how many people in Northern Ireland had cerebral palsy. In addition, little information was known about how many people were likely to develop the condition and what their service and support needs might be. The Department of Health and Social Services provided the initial funding for the NICPR.
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.
How information is collected
- Professionals involved in the care of children with cerebral palsy, including doctors, physiotherapists and occupational therapists, inform the Register monthly about any newly diagnosed or newly referred children with the condition. Sometimes parents notify their child. This contact with parents and people with cerebral palsy is particularly welcome.
What happens the information after it is collected
- 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. Individuals are not identified or identifiable in any reports, publications or presentations produced.
Taking part in the Register is voluntary. Refusing to take part will not affect any services your child receives now or in the future. You can also request to have your child removed from the Register at any time. Under the Data Protection Act, you are entitled to know what information is kept about your child. Please ask your child’s doctor or therapist if you would like a copy of this information.
CONFIDENTIALITY AND ETHICS
The NICPR has been approved by the Queen’s University Belfast Ethics Committee and the Office for Research Ethics Committees in Northern Ireland. Data access agreements are held with all five Health and Social Care Trusts in Northern Ireland. All confidential information on the NICPR is protected by security systems and destroyed when no longer needed. The NICPR has a Privacy Notice that details why we collect personal information, what we do with it, and how we look after it. A copy of the Privacy Notice can be downloaded by clicking here.
The Register is governed by an Advisory Committee 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, a parent representative and a young adult with cerebral palsy.