In creating a standardised dataset for each of 21 Participating EUROCAT registries in 13 European countries containing a total of around 200,000 births we will:
- Enable reliable information on rare anomalies and syndromes to be obtained.
- Enable results to be generalisable across Europe.
- Establish a method of standardisation across Europe available for future research.
- Demonstrate that pan-European analysis of sensitive information can be performed safely.
Establishing the e-forum, “ConnectEpeople” will:
- Enable improved provision of the information families of children with congenital anomalies want.
- Have the potential to continue as a valuable, self-sufficient forum that continues after the project funding ends.