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Registries

What is a Severe Asthma Registry?

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, often operating at a national or international level. 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. Severe asthma registries inform clinical practice and seek to improve patient outcomes.

Why?

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,  Hiles et al. 2018). The International Severe Asthma Registry aims to characterise severe asthma at a global level (FitzGerald et al. 2020).

Real-world representation of severe asthma

Access to new and emerging severe asthma treatments such as monoclonal antibody (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. Understanding real-world treatment effectiveness and patient characteristics associated with response is particularly useful when choosing between multiple treatment options for an individual patient.

Australasian Severe Asthma Registries

Australasian Severe Asthma Registry (ASAR)
Registries for Bronchial Thermoplasty
Australasian Severe Asthma Registry (ASAR)

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 Australasian Severe Asthma Registry (ASAR), originally  established by the ASAN as the Severe Asthma Web-Based Database (SAWD), is an ongoing investigator-initiated observational registry of patients with severe refractory asthma and a comparator group of patients with controlled non-severe asthma (McDonald et al, 2018).

Registries for Bronchial Thermoplasty

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, Burn et al. 2019).

Registries for Monoclonal (biologic) Antibody Therapies
Australian Mepolizumab Registry (AMR)
Australian Xolair Registry (AXR)
Australian Benralizumab Registry (ABenRa)
Australian Dupilumab Registry (ASADR)
Australian Mepolizumab Registry (AMR)

The ASAN Australian Mepolizumab Registry (AMR) enrolled patients in Australia with severe refractory eosinophilic asthma who were prescribed mepolizumab (Nucala), providing useful post-marketing information regarding this treatment and patient group. The AMR is a database for ongoing analyses.

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Australian Xolair Registry (AXR)

The Australian Xolair Registry (AXR) is an investigator-initiated, observational post-marketing surveillance registry of patients with severe allergic asthma undergoing omalizumab (Xolair) therapy managed by the Australasian Severe Asthma network (ASAN). The registry is no longer enrolling patients.

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Australian Benralizumab Registry (ABenRa)

The Australian Benralizumab Registry (ABenRa) is a module of the Australasian Severe Asthma Registry (ASAR). The registry was developed to collect and report on data from people with severe refractory eosinophilic asthma who receive benralizumab (Fasenra) treatment in Australia. Read more on the Australian Severe Asthma Registry Page

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Australian Dupilumab Registry (ASADR)

The Australian Dupilumab Registry (ASADR) is a module of the Australasian Severe Asthma Registry (ASAR).  The registry aims to examine the characteristics of people initiated on dupilumab (Dupixent) and their responses to treatment in a real-world setting in Australia. Read more on the Australian Severe Asthma Registry Page

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Key Points

  • Severe asthma registries allow us to characterise severe asthma phenotypes in the real-world setting and provide insight into patient eligibility and suitability for new and emerging targeted treatments.
    • Monoclonal antibody treatments and procedures like bronchial thermoplasty (BT) are being evaluated through severe asthma registries.
  • Severe asthma networks, such as the Australasian Severe Asthma Network (ASAN), facilitate the multi-centre and standardised data collection required for severe asthma registries.
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