Bronchiectasis is a chronic, progressive respiratory disorder with recurrent pulmonary infections. Evidence on its cost is limited, especially for indirect costs[1]. The EMBARC (European Multicentre Bronchiectasis Audit and Research Collaboration) network implemented a Bronchiectasis registry. Registries play a limited role in cost-of-illness studies[2], but they have the advantage of collecting real world data for all cost items, if properly designed.

We aimed at investigating the role of EMBARC Registry for a cost-of-illness study on Bronchiectasis and designing a research protocol for this study.

We conducted a gap analysis, based on EMBARC Registry documentation and a Questionnaire administered to five members of EMBARC network. EMBARC Registry collects data on healthcare resource consumption. EMBARC centres have access to unit cost for health care resources in their countries. The EMBARC Registry does not collect data on other costs.

We designed a cost-of-Illness as an observational, multicentre, retrospective, bottom-up and prevalent-based study, considering that years 2020 and 2021 are affected by bias on access to healthcare generated by the pandemic. EMBARC Registry data will be integrated by a survey administered to patients for other resources and their monetization. To avoid pandemic-driven bias healthcare resources will refer to year 2019 and survey will mostly refer to the six months before patients’ recruitment. A 200 patients target per country (1000 patients in all) was identified. Patients will be consecutively recruited on the grounds of their access to the EMBARC Centres, without randomisation.

[1] Goeminne PC, Hernandez F, Diel R, et al. The economic burden of bronchiectasis - known and unknown: a systematic review. BMC Pulm Med. 2019;19(1):54. Diel R, Chalmers JD, Rabe KF, et al. Economic burden of bronchiectasis in Germany. Eur Respir J. 2019 Feb 28;53(2):1802033.

[2] Onukwugha E, McRae J, Kravetz A, et al. Cost-of-Illness Studies: An Updated Review of Current Methods. Pharmacoeconomics. 2016;34(1):43-58.