The Northern Ireland Cerebral Palsy Register (NICPR)
What is the Northern Ireland Cerebral Palsy Register?
The Register is a confidential record of children with cerebral palsy born in Northern Ireland since 1977 or
living in Northern Ireland since 1991. It is important to know about every child or young person with the condition,
even those with mild forms, particularly when researching the causes of cerebral palsy and trends over time.
When was the Register set up?
The NICPR was set up in 1991 in response to uncertainty about the number and needs of children and young people
with cerebral palsy and their families in Northern Ireland. In particular there was concern that the improved survival
of very small and premature babies who are particularly at risk of developing cerebral palsy, would lead to an increase
in overall numbers and severity of the condition. Also the extent to which services like physiotherapy, were meeting
the needs of children was unclear.
Why a Register?
A register can:
- Provide accurate and complete information about the number and the needs of children and young people with
cerebral palsy for planning services.
- Be used to monitor changes in the condition over time particularly to see if cerebral palsy is becoming more
common or more severe and how any changes compare with other geographic areas and countries.
- Provide support for research involving children and young people including health services research and
research into functional abilities, quality of life and causes of cerebral palsy.
What information is collected?
- Child’s name, address of residence and date of birth
- Type and severity of movement problems including walking ability and use of arms and hands
- 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 - School attended
- Professionals seen
- Child’s G.P.
Please note that a child’s name and address are not entered directly onto the computer. Each child is given
a unique identifier and this is entered along the postcode.
How is the information collected?
Since its establishment over 2,000 children and young people have been registered. Children and young people
are notified to NICPR by professionals involved in their care (usually the Paediatrician, Physiotherapist, School
Nurse, Orthopaedic Surgeon). Parents can also notify their child directly to the Register and indeed contact
from parents 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 (1998) 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, scientific
presentations and to generate local information. Individuals are not identified or identifiable in any reports,
publications or presentations produced. Some of these presentations have been to parent support or action
groups, while others are to professionals or service planners.
Some of the work of the NICPR has included an analysis of trends in prevalence from 1981 to 1997 and
an assessment of the impact of improved survival among small babies on cerebral palsy prevalence during
this time. We are currently preparing data to explore trends during more recent birth years (1998-01).
We are also currently carrying out work into the role of socioeconomic inequalities and their impact on
cerebral palsy prevalence. Other studies have included an investigation into services; children with cerebral
palsy and seizures; and the prevalence of eyesight problems (accommodation). A summary of the work of
the NICPR is given in a comprehensive report freely downloadable from:
NICPR is now one of the longest running of all cerebral palsy registers in Europe. We are very grateful to
all the families who have so willingly taken part and to all the professionals who have helped to maintain
NICPR and who have helped to contact families to invite them to take part in research. The NICPR was
has been funded by the Department of Health, Social Services and Public and Safety (DHSSPS) and the
four area Health and Social Services Boards of Northern Ireland (previously). It is currently funded by
DHSSPS until March 2007.
Who has reviewed the Register?
The Register has been approved by the Queen’s University Ethics Committee. 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 Department of Health, Social Services and Public Safety
for Northern Ireland (DHSSPSNI).
Contact and further information
If you have any further queries, would like more information or to notify a child to the Register
please contact us.
Northern Ireland Cerebral Palsy Register
Room 1.36
Mulhouse Building
Queen’s University Belfast
Institute of Clinical Science
Grosvenor Road, Belfast BT12 6BJ
Telephone: 028 9063 5045
Frequently Asked Questions
What is cerebral palsy?
The term cerebral palsy describes a wide range of conditions affecting a child’s ability to move
or control their movement. 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
and 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 severe movement problems 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.
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