REAL-WORLD DATA SOURCES LANDSCAPE ASSESSMENT FOR BRONCHIECTASIS AND CHRONIC OBSTRUCTIVE PULMONARY DISEASE TO SUPPORT CLINICAL, EPIDEMIOLOGICAL, AND HEALTH ECONOMIC RESEARCH
Author(s)
Klas Bergenheim, PhD1, Shanti Neff-Baro, BA, MSc2, Valentine Laizet, MSc in biostatistics3, Atara Laor, MSc3, Kari Guo, MSc3, Gabriela Friedrich, MSc4.
1AstraZeneca, Molndal, Sweden, 2Amaris Consulting, Paris, France, 3Amaris Consulting, Montreal, QC, Canada, 4Amaris Consulting, London, Spain.
1AstraZeneca, Molndal, Sweden, 2Amaris Consulting, Paris, France, 3Amaris Consulting, Montreal, QC, Canada, 4Amaris Consulting, London, Spain.
OBJECTIVES: Bronchiectasis (BE) and chronic obstructive pulmonary disease (COPD) are heterogeneous respiratory diseases with substantial unmet needs, highlighting the importance of real-world data (RWD) for evidence generation. This study mapped global RWD sources for BE and COPD, including BE subpopulations by cystic fibrosis and pseudomonas aeruginosa (PsA) colonization status, to evaluate their suitability for clinical, epidemiological, and health economic research.
METHODS: Two targeted literature reviews (January 2015 - April 2026) identified RWD sources for BE and COPD through searches of Embase, Medline and grey literature using disease-specific PICOS criteria. Extracted information included database type, geographic coverage, collection methods, access requirements, and availability of data on: patient characteristics, disease features, healthcare resource use (HCRU), costs, and quality of life (QoL)/patient-reported outcomes (PROs). Availability of key variables was confirmed directly with data vendors. Results were visualized in a Power BI repository.
RESULTS: 112 databases were identified, 29 specific to BE, 66 specific to COPD and 17 covering both conditions. Most databases represented populations in the US (n=38), UK (n=12), China (n=11), Germany (n=10) and Sweden (n=8), while 9 included data from multiple countries. Sources comprised registries, claims/administrative databases, electronic health records (EHRs), and research datasets. Detailed characterization of data availability was completed for BE databases. Demographic information, diagnoses, comorbidities and HCRU were commonly available. Microbiology data, symptoms/severity measures, laboratory results, and PRO/QoL were limited or absent. Access requirements varied, ranging from publicly accessible data to application- and agreement-based access. COPD characterization is ongoing and will enable cross-disease comparisons.
CONCLUSIONS: A large and diverse RWD landscape was identified for BE and COPD. The completed BE assessment revealed variability in the availability of clinical, microbiology, HCRU, and PRO/QoL data, underscoring the need for fit-for-purpose database selection. This mapping resource provides a foundation for clinical, epidemiological, and health economic research.
METHODS: Two targeted literature reviews (January 2015 - April 2026) identified RWD sources for BE and COPD through searches of Embase, Medline and grey literature using disease-specific PICOS criteria. Extracted information included database type, geographic coverage, collection methods, access requirements, and availability of data on: patient characteristics, disease features, healthcare resource use (HCRU), costs, and quality of life (QoL)/patient-reported outcomes (PROs). Availability of key variables was confirmed directly with data vendors. Results were visualized in a Power BI repository.
RESULTS: 112 databases were identified, 29 specific to BE, 66 specific to COPD and 17 covering both conditions. Most databases represented populations in the US (n=38), UK (n=12), China (n=11), Germany (n=10) and Sweden (n=8), while 9 included data from multiple countries. Sources comprised registries, claims/administrative databases, electronic health records (EHRs), and research datasets. Detailed characterization of data availability was completed for BE databases. Demographic information, diagnoses, comorbidities and HCRU were commonly available. Microbiology data, symptoms/severity measures, laboratory results, and PRO/QoL were limited or absent. Access requirements varied, ranging from publicly accessible data to application- and agreement-based access. COPD characterization is ongoing and will enable cross-disease comparisons.
CONCLUSIONS: A large and diverse RWD landscape was identified for BE and COPD. The completed BE assessment revealed variability in the availability of clinical, microbiology, HCRU, and PRO/QoL data, underscoring the need for fit-for-purpose database selection. This mapping resource provides a foundation for clinical, epidemiological, and health economic research.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
RWD184
Topic
Clinical Outcomes, Real World Data & Information Systems
Disease
Respiratory-Related Disorders (Allergy, Asthma, Smoking, Other Respiratory)