Asthma Patient Registries May Now Have Standardization of Outcome Measures

A total of 46 outcome measures, including measures from 13 asthma registry sponsors, were evaluated and curated.

A set of 21 standardized outcome measurements was developed for data entry in asthma registries to enable data comparison for use in asthma research and clinical practices. The development process was detailed in a study published in the Journal of Allergy and Clinical Immunology.

Researchers identified a set of outcome measurements and corresponding definitions of standard terminology to create a basic data collection set that would be used to collect information during routine clinical appointments before being entered into asthma registries to construct uniformity among the data across asthma registries.

Professionals associated with the asthma registries and asthma-related databanks as well as experts in the field worked together to assess pertinent asthma-related outcome measures using the Outcome Measures Framework, then rated each measure based on health priority. Using this rating system, members of the group came to a consensus for a minimum set of measurement and narrative definitions.

A total of 46 outcome measures, including measures from 13 asthma registry sponsors, were evaluated and curated. The resulting minimum measurement set included 21 measurements that are feasible to collect at clinical appointments and suitable for both adults and children. Some examples of these measurements are exacerbations, medication adverse events, hospitalizations, lung function, medication use and changes, quality of life, and missed days of school or work. The narrative definitions were standardized into a library to assist data entry into the electronic health records database.

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Limitations of these minimum standard outcome measures include the difficulties of consistent information collection across different settings, variations in the disease that create special circumstances that are not included in the outcome measurements, and the lack of a consistent tool to collect asthma-related quality of life information.

The researchers concluded that collecting these 21 standardized outcome measurements into registries “would support creation of a national research infrastructure to efficiently address new questions and improve patient management and outcomes.”

Disclosures: Several authors report associations with pharmaceutical companies. Please see the original reference for a full list of authors’ disclosures.


Gliklich RE, Castro M, Leavy MB, et al. Harmonized outcome measures for use in asthma patient registries and clinical practice [published online March 8, 2019]. J Allergy Clin Immunol. doi:10.1016/j.jaci.2019.02.025