Central Registry

The Central Registry is located at the Foundation IRCCS ‘Carlo Besta’ Neurological Institute in Milan, Italy.

Activities carried out at the Central Registry include:

1. collection and management of data sent by National coordinators: Case Report Forms are carefully checked and resent to physicians when corrections and additional information are needed
2. supervision of activities within the EURAP network to ensure the strongest concordance between national databases and the Central Registry
3. online assistance and technical support for all EURAP collaborators
4. regular revision of procedures to improve data transmission and analysis
5. handling of pregnancies with descriptions of malformations to be submitted to the Outcome Assessment Committee
6. periodical analysis of data and auditing to ensure accuracy and completeness and provide statistics for half-yearly Interim Reports