First results of Liguria-Trento transplant network project: a model for a macroregional network and real-time registry in Italy.

In Italy, health-care telematic is funded and supported at the level of national government or regional institutions. In 1999, the Italian Ministry of Health started to fund the Liguria-Trento Transplant Network (LTTN) project, a health research project with the aim to build an informative system for donor management and transplantation activity in a macroregional area. At the time of LTTN project proposal, no published Transplant Network Informative System fulfilled Italian rules on telematic management of electronic documentation concerning transplantation activity. Partnership of LTTN project were two Regional Transplant Coordinating Centres, Nord Italia Transplant Interregional Coordinating Centre and the Italian Institute of Health/National Transplant Coordinating Centre. Project Total Quality Management methods were adopted. Technological and case analysis followed ANSI-HL7, CEN-TC251, and Object-Oriented Software Engineering standards. A low-tech prototype powered by a web access relational database is running on a transplant network including web-based clients located in 17 intensive care units, in Nord Italia Transplant Interregional Coordinating Centre, and at the Italian Institute of Health/National Transplant Coordinating Centre. LTTN registry includes pretransplant, surgical, and posttransplant phases regarding liver, kidney, pancreas, and kidney-pancreas transplantation in adult and pediatric recipients. Clinical specifications were prioritized in agreement with the RAND/UCLA appropriateness method. Further implementation will include formal rules for data access and output release, fault tolerance, and a continuous registry evolution plan.