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 child's life.

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 feeding.

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 then.

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.