The Latin American Idiopathic Pulmonary Fibrosis Registry (REFIPI): Baseline Characteristics

Roldán, Ivette Buendia; Caro, Fabián; Curbelo, Pablo; Kairalla, Ronaldo Adib; Mejía, Mayra; Noriega, Lorena; Paulín, Francisco; Undurraga, Álvaro; Selman, Moisés

doi:10.1183/13993003.congress-2019.pa4699

Cited by 1 publication

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“…In addition, the paucity of data from many developing countries may reflect competing public health priorities, particularly of pulmonary diseases like tuberculosis, which disproportionately impact Asia, South America, and Africa. Multinational collaborative registries between ILD referral centers, like the recently established Latin American Idiopathic Pulmonary Fibrosis Registry (REFIPI), have the potential to consolidate resources and bridge this knowledge gap ( 35 ). Building on these types of registries to better understand the burden and relative frequencies of ILD in understudied countries would be informative, especially in light of increasing literature exploring the complex interplay between genetics, environment and ILD.…”

Section: Areas For Improvement and Future Directionsmentioning

confidence: 99%

Variability in Global Prevalence of Interstitial Lung Disease

et al. 2021

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There are limited epidemiologic studies describing the global burden and geographic heterogeneity of interstitial lung disease (ILD) subtypes. We found that among seventeen methodologically heterogenous studies that examined the incidence, prevalence and relative frequencies of ILDs, the incidence of ILD ranged from 1 to 31.5 per 100,000 person-years and prevalence ranged from 6.3 to 71 per 100,000 people. In North America and Europe, idiopathic pulmonary fibrosis and sarcoidosis were the most prevalent ILDs while the relative frequency of hypersensitivity pneumonitis was higher in Asia, particularly in India (10.7–47.3%) and Pakistan (12.6%). The relative frequency of connective tissue disease ILD demonstrated the greatest geographic variability, ranging from 7.5% of cases in Belgium to 33.3% of cases in Canada and 34.8% of cases in Saudi Arabia. These differences may represent true differences based on underlying characteristics of the source populations or methodological differences in disease classification and patient recruitment (registry vs. population-based cohorts). There are three areas where we feel addition work is needed to better understand the global burden of ILD. First, a standard ontology with diagnostic confidence thresholds for comparative epidemiology studies of ILD is needed. Second, more globally representative data should be published in English language journals as current literature has largely focused on Europe and North America with little data from South America, Africa and Asia. Third, the inclusion of community-based cohorts that leverage the strength of large databases can help better estimate population burden of disease. These large, community-based longitudinal cohorts would also allow for tracking of global trends and be a valuable resource for collective study. We believe the ILD research community should organize to define a shared ontology for disease classification and commit to conducting global claims and electronic health record based epidemiologic studies in a standardized fashion. Aggregating and sharing this type of data would provide a unique opportunity for international collaboration as our understanding of ILD continues to grow and evolve. Better understanding the geographic and temporal patterns of disease prevalence and identifying clusters of ILD subtypes will facilitate improved understanding of emerging risk factors and help identify targets for future intervention.

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Section: Areas For Improvement and Future Directionsmentioning

confidence: 99%