Cerebral Palsy Register for Scotland
Capability is the new home of the Cerebral Palsy Register for
Scotland (CPRS).
Until December 2010 the CPRS was hosted by Edinburgh Napier
University but Capability agreed to host the Register from January
2011 to guarantee its future.
The CPRS was launched in April 2003 as a research tool with the
aim of investigating Cerebral Palsy (CP) and how it might be
affecting the way children with CP and their families live. It
includes children born after the 1 January 1990 and was set up to
study trends in the numbers of children and young people with CP
who are living in Scotland and the type of problems they may
face.
The first step is for parents or carers to give their consent
for their child to appear on the register. The register then
records information from the child's doctors, parents/carers and,
where possible, the child themselves. It aims to look at the whole
picture so, for example, the child's paediatrician is asked about
the diagnosis and the child's main carer is asked to complete a
questionnaire outlining the effect of CP on the child.
In the future it is hoped that the information recorded in the
register might be able to help us better understand the causes of
CP. For example, there is a routine collection of information on
babies born in Scotland which is undertaken by ISD, the Information
and Statistics Division of the Health Service. By linking
this information to what we have gathered we hope to identify
trends related to occurrences of CP.
The benefits of the register are not only medical. We also plan
to research the services that are available to children and young
people with CP. In the future we hope to use the register to
identify people who might be willing to take part in studies of how
best to help people with CP.
Overall our aim as the new managers of the CPRS is to create a
true community of interest around Cerebral Palsy in Scotland, based
on a relationship between people with shared experiences, concerns
and hopes. For those involved whether they are affected by CP,
within the medical profession or here at Capability the register
presents an unrivalled opportunity to increase our knowledge and
understanding and improve services, support and medical care in the
future.
