The cerebral palsies are the most common cause of physical disability in early childhood, affecting around three per 1000 births. The 2018 report, Each and Every Need, highlighted deficiencies in care provided to this group of children.
There is a need for improved data collection and national-level data sets to help our understanding and management of services for people with cerebral palsy. The nature and extent of the population of people with cerebral palsy in Wales is unknown, only estimated based on data from other countries. This makes planning for this group of people inaccurate.
This register, the first national CP register in Great Britain, is led by Bevan Fellow and Paediatrician Dr Rachel Lindoewood and will enable planning and delivery of targeted quality services for people who have cerebral palsy. Research has shown that having a comprehensive CP register reduces the number of incidents of contracture, hip dislocation and the need for surgery in children who have cerebral palsy.
The register will give clinicians and academics the research evidence and information they need to design and improve services. The project aims to improve participation and quality of life for individuals with Cerebral Palsy and their families.
The project will provide a population register of people who have Cerebral Palsy in Wales. The standardised data (using the recommended SNOMED-CT coding) will increase our understanding of the extent and nature of the population, informing service planning across the lifespan and during transitions.
This will improve care and lead to improved health outcomes and quality of life. An important aspect of the register is the involvement and engagement of individuals who have cerebral palsy and their families in its development.
Bevan Fellow Dr Rachel Lindoewood said: "We hope the register will help us... work out where the resources need to be focused to bridge those gaps and get better outcomes for everybody with cerebral palsy.
"Potentially, by not having those services, people could end up with more complications from their cerebral palsy which could have an impact on their long term ability.
"So it is serious and it is urgent."