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 do include:

1. collection and management of data sent by National coordinators or Reporting Physicians: Case Report Forms are carefully checked by the central registry staff and resent to physicians when corrections or additional information are needed.
2. online assistance and technical support to all EURAP collaborators.
3. regular revision of procedures to improve data transmission and analysis.
4. handling of pregnancies with descriptions of malformations to be submitted to the Outcome Assessment Committee.
5. data auditing and periodical analysis to ensure accuracy and completeness and to provide statistics for semestral Interim Reports.