A novel web-based tool for lung transplant patients undergoing extracorporeal photopheresis

Introduction Extracorporeal photopheresis (ECP) is considered an emerging rescue therapy for patients with CLAD (chronic lung allograft dysfunction). The aim of the study was to set up a web-based data collection tool for lung transplant patients with CLAD undergoing ECP. Methodology The web-based tool was developed using Oracle MySQL and coded in HTML, JavaScript and CSS (Cascading Style Sheets) and was set up with pre and post transplant data of possible interest in CLAD. The functionality assessment of the software was carried out using data from a cohort of CLAD patients undergoing ECP treatment. Results The software consists of seven 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 FEV1, 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, BOS phenotype and absence of recurrent respiratory infections before diagnosis of CLAD seem to be associated with a positive response to ECP therapy.