ELIPSIS: developing tools to better understand VOC in SCD

摘要

In this issue of Blood, Pittman et al report on their use of an elegant and innovative at-home study design to prospectively follow patients with sickle cell disease (SCD) over 6 months. The study, Evaluation of Longitudinal Pain Study in Sickle Cell Disease (ELIPSIS), showed that patients could be monitored at home with an electronic patient-reported outcome (ePRO) tool, a mobile-based blood collection team, and a wearable actigraphy device to monitor activity and sleep.(1) Many clinical trials focus on vaso-occlusive crisis (VOC), but this study explored novel end points and used a home-based study design to address the difficulty in accurately capturing patient experiences over the long term.