A severe asthma registry is an organised system for tracking the clinical care and outcomes of people with severe asthma.
Registries use ‘real-world’ observational data from many sites around the country. The sources of information may include patient medical records, patient-reported data and physician-reported data. The information collected may be utilised to answer research questions about the population and/or monitor and report on healthcare quality and patient management.
The World Health Organization has noted that ‘Severe asthma registries provide a foundation to generate a greater understanding of public health need, and to define phenotypic heterogeneity’ (Bousquet et al. 2010). Severe asthma networks, including those in the UK/Europe, North America and Australasia have established severe asthma registries/patient cohorts to characterise the severe asthma patient population (Dolan et al. 2004, Heaney et al. 2010, Schleich et al. 2014, Senna et al. 2017).
Real-world representation of severe asthma
The access to new and emerging severe asthma treatments such as biologic therapies is guided by eligibility criteria derived from randomised controlled trials (RCTs), however only 10% of patients with severe asthma are thought to meet these criteria (Albers et al. 2018).
Practice-based information collected through severe asthma registries can provide insight into the proportion of patients who would be eligible for and/or benefit from these expensive treatments.
The Australasian Severe Asthma Network (ASAN) is group of respiratory physicians and professionals with expertise in severe asthma across more than 30 centres in Australia, New Zealand, Singapore and China. The ASAN’s Severe Asthma Web-Based Database (SAWD) is an ongoing investigator-initiated observational registry of patients with severe refractory asthma and controlled non-severe asthma.
The ASAN Australian Mepolizumab Registry (AMR) is currently enrolling patients in Australia with severe refractory eosinophilic asthma who are prescribed mepolizumab (Nucala).
Registries for patients with severe refractory allergic asthma who are prescribed omalizumab, such as the Australian Xolair Registry (AXR), have provided useful post-marketing information regarding this treatment and patient group.
The international ERS/ATS guidelines on severe asthma recommend that bronchial thermoplasty (BT) be performed in the context of independent approved systematic registries or studies (Chung et al. 2014). Data from patients who undergo BT is being collected through severe asthma registries such as the UK Severe Asthma Registry (Burn et al. 2017) and SAWD.
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