Living Donor Registry. The Experience of Living Donation Community.

Abstract

INTRODUCTION Nowadays, there is no any central database for Living Donation practices in Europe, although the European Directive 2010/53/EU obliges the member states to have a registry to assure the traceability, security, transparency and follow-up of the donation process. Living Donor Observatory (LIDOBS) a multidisciplinary team of international experts in the field, is concerned into developing a central database for these practices. Such registry will ensure a rich resource of information for European transplant community and will be very useful for all the centers applying Living Donors (LDs) practices. OBJECTIVE To develop an on-line simplified registry model for LDs, offering central database reports to an international level. METHODS LIDOBS registry use the database created previously during EULID project (European Donation and Public Health) and tested for EULID participating countries. The registry data are classified in three levels: 1stTransparency: Include the mandatory data. 2ndSecurity: Include the recommended data of clinical pre and post donation parameters. 3rdQuality of donation programs:Include excellence data representing the quality of donation programs. All these data are collected by the application of the questionnaires that evaluate LD satisfaction and their psychosocial follow-up. RESULTS Nowadays, LIDOBS registry is active and is being used for several research projects national and international level, that LIDOBS group is running out. Currently there are more than 1700 registered LDs with mandatory data from 19 centers in 13 European countries. 1538 out of these are Kidney LDs and 162 are liver LDs. This divergence is due to the superiority in number and operative centers for Kidney LDs programs. CONCLUSIONS: An online database is useful to simplify the registration and analysis processes, increasing the quality of the disposable information on LDs as well increasing the quality of the programs. All registries offer the opportunity to promote results and experiences on donation and transplantation activity development.