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What is cerebral palsy?
Progress
Cerebral palsy is the term for a range of movement difficulties which are caused when the parts of the
brain which control such movements do not work properly. It is the commonest cause of significant
physical impairment in children.
In 1998, a collaborative network of cerebral palsy registers in 14 centres in 8 countries across Europe
was formed. http://www-rheop.ujf-grenoble.fr/scpe2/site_scpe/index.php
Because it is due to the brain being malformed or damaged, there are often associated difficulties
of vision, hearing, intellect, communication and feeding. The condition may affect the subjective
wellbeing of children and their ability to participate fully in life.
Why have a register of children with cerebral palsy?
Cerebral palsy occurs in about two babies per 1000 live births. It is important to measure trends in
prevalence over time and to understand better the causes of cerebral palsy. Registers of all children
born in a region with cerebral palsy can help with this. They can also help with planning services and
allow parents of children with cerebral palsy to be told about research projects.
Why have a network of registers?
Each register has its own case definitions, inclusion and exclusion criteria and classifications for
associated impairments. Bringing together registers helps development of common classifications.
Most centres do not have sufficient numbers of cases of cerebral palsy to be able to provide reliable
estimates of trends over time in prevalence rates or to have sufficient statistical power to study causes
and health service questions. By pooling anonymous data from different registers, it is possible to undertake special analyses such as of cerebral palsy in very low birth weight babies.
The aim of this network, called Surveillance of Cerebral Palsy in Europe (SCPE), was to establish a
central database of children with cerebral palsy in order to monitor trends in birth weight specific rates,
to provide information for service planning and to provide a framework for collaborative research.
The agreed criteria for case definition, inclusion and exclusion and minimum dataset have been reported:
• SCPE Collaborative Group. Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy
surveys and registers. Developmental Medicine and Child Neurology. 2000;42:816-24.
• Recommendations from the SCPE collaborative group for defining and classifying cerebral palsy.
Developmental Medicine and Child Neurology. Supplement. 2007;109:35-8.
• A reference and training manual is available on CD, soon to be web based. Medical Education. 2009:
43:495-6.
Two of many published studies were reported in the LANCET:
• Jarvis et al. Cerebral palsy and
intrauterine growth in single births:
European collaborative study. Lancet.
2003;362:1106-11.
It was already known that cerebral
palsy is more common if a baby is
born very early. This paper found that
there is an optimal growth pattern in
the womb. If, as well as being born
early, a baby has not grown well in the
womb, then the chance of cerebral
palsy is very high.
• Platt et al. Trends in cerebral palsy
among infants of very low birth
weight (<1500 g) or born prematurely
(<32 weeks) in 16 European centres – a
database study. Lancet. 2007:369:43-50.
This paper found that rates of
cerebral palsy in very small babies are
decreasing.
During the period 2005-08 the registers of children with cerebral palsy in Europe
participated to the EURO-PERISTAT projects. These projects focused mainly on
routine perinatal health reporting, but longer term consequences of perinatal
complications were highlighted as important gaps to fill.
It was considered important to monitor rates of cerebral palsy because higher survival rates among very
low birth weight babies and rising rates of multiple births have increased the proportion of children
with cerebral palsy who are born. Data collection on perinatal indicators such as preterm birth, delivery
mode, multiple births, neonatal mortality, congenital anomalies and cerebral palsy was facilitated by
collaborative efforts between the European networks: SCPE, Europeristat, Euroneostat and Eurocat.
http://www.europeristat.com/publications/european-perinatal-health-report.shtml
Progress continued
A research project was developed by the collaboration and involved 7 of the
regions. The research concerned primarily the lives of children with cerebral palsy
rather than the condition cerebral palsy, its causation and how common it was. The
project, called SPARCLE, was funded by Framework 5 of the EU Health Research
Programme 2002-06.
Learning more about children with
Cerebral Palsy in Europe
It introduced modern concepts about disability and in particular examined the quality of life of children
with cerebral palsy. It has a website http://www.ncl.ac.uk/sparcle and many publications.
Of its many findings, one was that children with cerebral palsy report themselves to have the same
quality of life as children in the general population of the same age and from the same country.
Another finding was that pain was much commoner than had been appreciated and it affected quality
of life. A third finding was that children with cerebral palsy in some European countries participate
more fully in life activities than in other countries.
Current work: SCPE-NET
The work, which began in 1998, has now become
a sustained programme of evolving work involving
21 centres.
The collaboration is now examining variations in
clinical practice across Europe, access to health
care, and further refinement of how children with
cerebral palsy are described.
This work, called SCPE-NET, is undertaking the
following tasks:
Surveillance of Cerebral Palsy in Europe
SCPE is a collaboration of registers of children with cerebral palsy
which formed in 1998 and since then has undertaken successive
programmes of work funded by the European Union (EU).
The work has brought together paediatricians, paediatric neurologists,
epidemiologists and therapists from across Europe.
The aim of the SCPE network is to disseminate knowledge about cerebral palsy
through epidemiological data, to develop best practice in monitoring trends in CP,
and to raise standards of care for children with cerebral palsy.
1Improving methods of recording data
Neuro-imaging. Development of a validated classification of images of the newborn baby’s brain
following ultrasound or MRI scan
Communication. Identification of the best instrument(s) for classifying communication dificulties of
children with cerebral palsy
2Description of variations in healthcare of children with cerebral palsy across Europe
Access to healthcare in relation to socio-economic indicators
Management of hip problems and use of intra-thecal baclofen
Recording and management of growth and nutrition
3Improving public access to information
Further development of registers in terms of data quality and consideration of extension to cover all
4
children with intellectual impairment
Health Programme
2008-2013
Together for Health
For more information, contact info@scpenetwork.eu
or visit http://www.scpenetwork.eu
Austria • Cyprus • Denmark • France • Germany • Hungary • Iceland
Ireland • Italy • Latvia • Lithuania • Netherlands • Norway
Portugal • Slovenia • Spain • Sweden • United Kingdom
SCPE projects funded by
The European Union
SCPE1: DG XII-BIOMED2-BMH4-983701
SCPE2: FP5-QLG5-CT-2001-30133
FP5-QLG5-CT-2002-00636
SCPE3: DG SANCO-EAPH-2003-3131
DG SANCO-EAPH-2007-0114
SCPE-NET: DG SANCO-EAHC-2008-1307