Frequently Asked Questions
What is cerebral palsy?
The term cerebral palsy describes a range of conditions affecting a child’s ability to move or control their movement due to problems with development or injury to the immature brain. The child’s movement can be affected by increased tone or stiffness in their muscles (spasticity); or by short and jerky movements (ataxia); or by poor control of slow or writhing movements (dyskinesia).
Other terms commonly used to describe types of cerebral palsy include hemiplegia (one side of the body is more affected than the other); diplegia (the legs are more affected than the arms); and quadriplegia (all four limbs are affected).
Why children with cerebral palsy?
- Cerebral palsy is the commonest cause of physical disability in children and it affects about one child in every 500. There are approximately 60 children diagnosed with cerebral palsy each year in Northern Ireland and up to 10,000 each year in the European Union.
- Cerebral palsy is up to 80 times more common among babies born too soon or too small and the number of tiny babies surviving continues to increase.
- Very little is still known about the precise causes of cerebral palsy and so the possibilities for prevention remain limited until more research is undertaken.
- It is important to find out how services could be improved for children with cerebral palsy
What is the Northern Ireland Cerebral Palsy Register?
The Register is a confidential record of children with cerebral palsy born or living in Northern Ireland. It is important to know about every child with the condition, even those with mild forms, particularly when researching the causes of cerebral palsy 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 physiotherapist.
Why a Register?
• To provide accurate and complete information about the number and the needs of children and young people with cerebral palsy for planning services.
• To monitor changes in the condition over time particularly to see if cerebral palsy is becoming more common or more severe as a result of the increase in small and premature babies now surviving.
• It is important to be able to make comparisons with other areas and countries.
• To support research involving children and young people including studies into functional abilities, quality of life, causes of cerebral palsy and health services research.
What information is collected?
Each child is followed with an assessment completed in a standardised form (or booklet, shown here). The child's doctor, physiotherapist or other health professional usually completes the form although information form parents and carers is always gratefully received. The information collected includes:
- Child’s name, address of residence and date of birth
- Type and severity of movement problems including walking ability and use of arms
- Presence of any other problems related to seizures, learning, speech and language, vision and hearing
- Birthweight, gestation, if the child was a singleton or multiple birth (e.g. twin, triplet) and postcode at birth
- Schools attended
- Professionals seen
- Child’s G.P.
How is the information collected?
Professionals involved in the care of children with cerebral palsy inform the Register on a monthly basis about any newly diagnosed or newly referred children with cerebral palsy. Sometimes parents notify their child. This contact with parents and people with cerebral palsy is particularly welcome.
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 if you would like a copy of this information.
What happens to the information?
The information on the Register is used to form 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. For example the graph shown here is typically how the data is presented in such outputs.
Who has reviewed the Register?
The Register has been approved by the Queen’s University Ethics Committee and more recently by the Office for Research Ethics (NI). The Register also has an Advisory Committee to guide and advise on its management and its future direction and includes a parent representative. The Register is funded by the Public Health Agency, Northern Ireland.