Severe asthma poses a significant healthcare burden to patients, yet much about the disease and its management is unknown, leading to suboptimal management of the disease. Research into rare diseases including severe asthma faces the inherent challenge of the limited number of patients within a clinical system. A cross-country study of severe asthma was further hindered by the lack of uniformity among local and national severe asthma registries in regard to the definition of severe asthma and fields of data captured. The International Severe Asthma Registry (ISAR; http://isaregistries.org/), was thus created as the world-first initiative to create a standardised, global registry for severe asthma. The ISAR represents a joint initiative where national registries retain ownership of their data but open their borders and share data with ISAR for ethically approved research purposes.
Creation of ISAR was met with challenges including the need to obtain ethical clearance from local ethics committees for data-sharing, to create governing bodies to ensure the quality of routine data capture and to create a standardised data capture system for all participating registries. Using our vast network of international collaboration, we brought together a panel of severe asthma experts from across the globe, including Singapore, to form the ISAR steering committee. Definitions of severe asthma and key data fields to be captured within ISAR was decided in a consensus within the steering committee. Following the creation of the ISAR, the steering committee currently governs and oversees the research activities conducted within ISAR, identifying and answering key research questions in severe asthma which are otherwise unanswerable without the combined expertise of an international panel of experts.
Currently, the ISAR has partnered with over 19 national or regional registries, with a wealth of over 7800 severe asthma patient data. Such a large dataset of high-quality data will be a key tool for a better understanding of severe asthma, its aetiology, and impact of treatment. Current results from this international collaboration also include the development of a risk prediction tool for prescription decision making, disease flareups and adverse events.