The Central Registry is located at the Foundation IRCCS ‘Carlo Besta’ Neurological Institute in Milan, Italy.
Activities carried out at the Central Registry include:
- 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
- supervision of activities within the EURAP network to ensure the strongest concordance between national databases and the Central Registry
- online assistance and technical support for all EURAP collaborators
- regular revision of procedures to improve data transmission and analysis
- handling of pregnancies with descriptions of malformations to be submitted to the Outcome Assessment Committee
- periodical analysis of data and auditing to ensure accuracy and completeness and provide statistics for half-yearly Interim Reports