Information for Parents
If your child has been diagnosed with cerebral palsy and lives
in Scotland, then you may want your child to be on the Cerebral
Palsy Register for Scotland. You can read more about the
Register here or you can get in touch with us if you
have any questions. There is also information for
your child about the Register.
To register, parents need to sign a consent form and return it to
us. We need your written consent to allow us to get
information from your child's paediatrician about them and how
cerebral palsy affects them.
The data collected on the Register comes from paediatricians,
parents and, if possible, the children and young people
themselves. Paediatricians give us information at the time of
diagnosis by completing a form and then at later times in your
Data collected at diagnosis includes information about the birth
of your child - birth weight, gestation and what happened to them
if they were in the neonatal intensive care unit.
Data collected later from the paediatrician includes information
about any problems with vision, hearing, communication and
Parents complete a lifestyle assessment questionnaire when your
child is 4 years old and then every 4 years after that. You
can download a copy or fill it out
online. However if you register your child when they are older
than 4 years, then we will ask you to complete the questionnaire
The questionnaire asks questions about family life and
disability. It asks questions about schooling, adaptations to
your home, whether you have had to change your employment because
of your child.
The Cerebral Palsy Register for Scotland is one of 5 Cerebral
Palsy registers in the UK. The others are in Merseyside and
Cheshire, the North of England,
Oxfordshire and surrounding counties, and Northern Ireland. The
registers collect and hold information about cerebral palsy that is
used for research into the condition. This research looks at
clinical issues as well as causes and trends.