Abstract
BACKGROUND: Extracorporeal photopheresis (ECP) is considered an emerging rescue therapy for patients with chronic lung allograft dysfunction (CLAD). The aim of the study was to set up a web-based data collection tool for lung transplant patients with CLAD undergoing ECP. METHODS: The web-based tool was developed using Oracle MySQL and coded in HyperText Markup Language, JavaScript and Cascading Style Sheets and was set up with pre- and post-transplant data of possible interest in CLAD. RESULTS: The software consists of 7 major sections. The validation cohort consisted of 25 lung transplant patients (13 men and 12 women, median age at transplant 51 years). A significant improvement in the rate of decline of forced expiratory volumes in 1 second (FEV1), forced vital capacity (FVC) and FEV1/FVC after introduction of ECP was observed. Forty-four percent of patients showed a <10% decline in FEV1 at 6 months. Patients with recurrent respiratory infections showed less probability of responding to ECP. CONCLUSIONS: Today informatics is an integral part of medical science and an essential tool for clinical decision-making under many circumstances, reducing costs and improving patient outcomes. The "Siena ECP Database" allowed us to identify major functional trajectories after the introduction of ECP. It showed good data collection capacity, providing significant pre- and post-transplant information associated with ECP response. Although no clear clinical profile of responders has yet been defined, bronchiolitis obliterans syndrome phenotype and absence of recurrent respiratory infections seem to be associated with a positive response to ECP therapy.