WWW accessible system for national/regional registries of clinical resultsof cord blood transplants: a tool to facilitate cooperative clinical research

A system, accessible via Internet, has been developed to support the Spanis h Registry of Cord Blood Transplants (RETSCU). The system includes a databa se of clinical results directly accessible by transplant centers (TCs) and cord blood banks (CBBs) (restricted to own cases regarding primary data and unrestricted regarding statistics derived from validated data) and gives o pen access to Web pages containing results approved for publication. It als o includes internal mail for two-way and broadcast messages. Patients' data are essentially those included in Eurocord forms. Additional features of t he system are: confidentiality; inalterability of validated primary data; i dentifiability of data sources. The Unix central computer is accessible via the WWW. For security, data transmission is encrypted and passwords are re quired for access. Copies are regularly updated. Data can be loaded from CB Bs and TCs. The procedure for creating and updating records is user-friendl y, with the possibility of errors being minimized by extensive automated ch ecks. Validation of patients' records by a manager is required before makin g data available for general statistical analysis. TCs and CBBs may retriev e data on their own cases, regardless of validation, as individual records or in tables directly transferable to common statistical programs. Statisti cal analysis may be done on validated data from all the patients in the Reg istry or from groups selected according to HLA compatibility and disease, t ype of transplant (related/unrelated), or protocol. Several similarly desig ned and managed national/regional Registries might be networked and their d ata integrated into a multinational Registry. Our system would require some additional developments to be used in this way. (C) 1998, Ferrata Storti F oundation.