SIOPEN-R-NET and the role of Internet in clinical trials

SIOPEN is the European Neuroblastoma Group of the International Society for Paediatric Oncology dedicated to study and care neuroblastoma. They organize a web space in which exchange acquired experiences: for instance, a tumour bank is present in order to determine prognostic parameters by biological studies conducted in several labs or hospitals as well as central serum banking allows pharmacokinetic studies to correlate drug levels with efficacy or toxicity in order to determine the optimum doses and improve medical procedures.

Moreover, SIOPEN-R-NET disposes on central database in which electronic case report forms (eCRFs), electronic data capture, remote randomisation and the distribution of information on trial progress are available. This network is currently used by 345 active users from 250 institutions in 18 European countries and gives also an important support to associations of families with children suffering from this disease. SIOPEN-R-NET is one example of how IT could help science to advance and medical programs to improve.

Thus, Internet is also an useful tool to make easily accessible, secure, safe and rapid multi-institutional clinical trials: geographically distant centers can enrol patients, promptly capture and manage data and communicate their results in real time, reducing paper chart documentation.