Registries

Disease related registries are the core of BARD-online. Creating an individual account enables participating centers to using non-expiring shielded databanks of unlimited capacity and it will ensure the data collection is uniform according to standard protocol. Access to all data including patient entry and followup will be restricted only to the individual centre. Even the administrator of the website has no possibility to open an individual centre databank, however the robustness of the data collected will be monitored so as to provide regular automatic reports to the centre of the total number of completed/incomplete datasets. In addition, BARD-online will issue a reminder function by sending out an e-mail, when patient related follow-ups are due. BARD will provide these services at no cost to the centre.

At any time, when patients´data are fed into the registry, a bio-bank button can be activated. Therein, storage of specimens, blood, urine or other samples is documented providing a kind of decentralized “virtual” biobank, which can - according to scientific board´s recommendations - voluntarily be fed into cumulative studies.

Disease related registries are the core of BARD-online. Creating an individual account enables participating centers to using non-expiring shielded databanks of unlimited capacity. Including follow-ups, the access to all data is exclusively restricted to the user. Even the administrator of the website has no option, to open any databank, except for evaluating the total number of completed/incomplete datasets. In addition to the center-bound costless registry, BARD-online offers a reminder function by sending out an e-mail, when patient related follow-ups are due.

Instructions for users

Claus Petersen | Department of Pediatric Surgery | Hannover Medical School | Carl-Neuberg-Strasse 1 | 30625 Hannover, Germany
Tel.: +49-(0)511-532-9040 | Fax: +49-(0)511-532-8052 | www.bard-online.com | biliary-atresia@mh-hannover.de