ISAR’s new publication ‘Adult severe asthma registries: a global and growing inventory’ to the journal Pragmatic and Observational Research celebrates the collaboration of the global asthma community to collect standardised data; encompassing data utilisation across 35 countries by 37 registries. Core variables resulting from ISAR’s Delphi study were found to be collected to >90% in the majority of severe asthma registries. This standardisation of data collection across registries enables data interoperability across the world, enhances statistical power of research conducted and, critically, catalyses the assembly of a global community with the common goal of enhancing care in severe and high risk asthma through high quality research. Going beyond research, standard data collection has set up previously disparate severe asthma ecosystems to adopt a global standard of care through quality improvement programs. The paper also highlights the utility of collecting individual country variables alongside standardized variables to support targeting for specific additional research questions such as linkage to EMR data.
To learn more about the study, please read the full publication in Pragmatic and Observational Research , as well as the accompanying slide deck.