The register will record symptoms, assessments and ongoing care for people living with the condition allowing improved surveillance and coordination with intervention programmes.
To encourage a collaborative approach toward the development of the register, a steering group has been established that includes parents, patients, representatives from all health boards, and other health leads.
"We are keen to engage people with cerebral palsy and their families in the development and content of the register and plan to use it to drive increased awareness and service improvement." says Jenny Carroll, Consultant Physiotherapist and Director of Bobath Children's Therapy Centre Wales.
"We believe the register will make a difference to the lives of people living with cerebral palsy through more equitable and evidence based services," says Powys Consultant Community Paediatrician and Bevan Commission Fellow, Rachel Lindoewood.
Representatives from NHS Wales Informatics Service have recently attended the first two informatics subgroups of the national steering group. At the forefront of discussions is the potential to incorporate the register with the Welsh Community Care Information System, particularly through physiotherapy.
"It's important that we're involved in these projects at an early stage. It means we can start those conversations on how projects like these can become part of our systems," says our National Clinical Informatics Lead, Joanna Dundon.
The project has been featured in
the latest report from the Chief Medical Officer in Wales.