FAQs

Local registries are needed to identify the needs of all children and young people with cerebral palsy living in a community, to help plan and provide the most up to-date, evidence-based healthcare. Previously a register for cerebral palsy has not existed in Wales.

Without cerebral palsy registries, it is not known who or where individuals with cerebral palsy are in their communities, whether they have access to proactive health services in order to have the same chance of achieving the best outcomes. There is evidence that in those countries where a proactive registry and system for monitoring the posture of children with cerebral palsy is in place, such as in Sweden, complications are prevented or kept to a minimum.

SCPE was set up in 1998. It involves professionals and researchers working together across Europe, linking up all the local cerebral palsy registers. This brings together doctors and therapists with expertise in cerebral palsy from across Europe. The aim is to share knowledge about the condition through population data to:

· Inform neonatal care

· Raise standards of care for people who have cerebral palsy

· Inform service planning

· Develop best practice, in monitoring trends in cerebral palsy

· Provide a framework for research.

Click to find out more about Surveillance of Cerebral Palsy in Europe 

Cerebral palsy is an umbrella term for a group of conditions that are each rare. By sharing information there is a bigger population to study. Having data about how many children and young people have cerebral palsy and how this affects them, across settings and over time, is already helping to improve the understanding of the causes of cerebral palsy. Local cerebral palsy registers send information about children and young people with the condition to the SCPE common database. No individuals can be identified and no names are shared. The SCPE database holds anonymised data securely. No individuals can be identified and no names are shared. The team can then analyse the data and learn from it. Many studies using the data have already led to better care for children with cerebral palsy.

Having data from different countries highlights variations in clinical practices and access to health care across Europe.

Please ask your child’s paediatrician or email info@cerebralpalsyregister.wales who will be able to give you a copy of all the information.

Please let your child’s paediatrician or email info@cerebralpalsyregister.wales. You can change your mind about this at any time.

This is of course allowed. Please contact your child’s paediatrician or email info@cerebralpalsyregister.wales. The care your child receives locally will not be affected in any way. You can change your mind about this at any time.