Why keep a local registry of children and young people with cerebral palsy?
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. Until now no cerebral palsy register existed in Wales. Without cerebral palsy registries, doctors and therapists do not know who or where individuals with cerebral palsy are in their communities. They do not know if they are all able to access proactive health services, or 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.
What is the Surveillance of Cerebral Palsy in Europe (SCPE)?
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.
Why keep a European database about children and young people with cerebral palsy?
Cerebral palsy is an umbrella term for a group of conditions that are each rare. 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 European common database. No individuals can be identified and no names are shared. The European database is held securely on the European Union’s Rare Diseases Platform, at the Joint Research Council. The team can then analyse the data and learn from it. A lot of 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. As of 2017, the SCPE central database contained anonymised data about more than 20 000 children with cerebral palsy across Europe.
How do I see the information that is kept on the register, including the information that is shared with the European central database?
Please ask your child’s paediatrician or physiotherapist, who will be able to give you a copy of all the information.
What do I do if I don’t want any information about my child to be included in the local register?
Please let your child’s paediatrician or physiotherapist know. You can change your mind about this at any time.
What if I agree to information about my child being included on the local registry, but do not agree to any information about my child, even if completely anonymised and not identifiable, being shared with the European central database?
This is of course allowed. Please let your child’s paediatrician or physiotherapist know. The care your child receives locally will not be affected in any way. You can change your mind about this at any time.