Real-life studies and registries of severe asthma: The advent of digital technology

Abstract

Severe asthma is a chronic and heterogeneous disease that negatively affects the quality of life of our patients and health care utilization. Given the remaining burden of uncontrolled disease in many of these patients, better understanding of its epidemiology, disease mechanisms, effectiveness of novel therapies such as biologics are still highly needed. Asthma treatment guidelines are largely informed by randomized controlled trials (RCTs) and meta analyses of RCTs, however inclusion criteria of many efficacy RCTs of asthma treatments often exclude a high number of patients with asthma in the community. Data from real-life studies and registries of severe asthma can complement efficacy studies by not only providing evidence on how a treatment performs in everyday clinical practice, post marketing safety information, data to support subsequent clinical trial design, but also helping to delineate the natural history of a disease and supporting important translational research endeavors. In the current review, we summarise available national and international collaborative studies and registries, the variables studies and the novel data and insights they provide. The key source of information for most asthma registries are real-life data from patient's electronic health records. Advent of digital technology in collecting data and their analysis is obvious and we draw attention to generation of new knowledge from registries of severe asthma to improve current diagnostic and therapeutic guidelines and asthma control.