Infodemiology of antiphospholipid syndrome: Merging informatics and epidemiology

Abstract

Objective: To investigate trends in Internet search volumes linked to Antiphospholipid Syndrome(APS), using Big Data monitoring and data mining.Methods: Based on the large amount of data generated by Google Trends and scientific search tools(SCOPUS, Medline/Pubmed, and ClinicalTrails.gov), we performed a longitudinal analysis based onthe term “antiphospholipid” in a 5-year web-based research.Results: Google Trends captured that APS-related digital interest was generally steady in the study peri-od (Relative Search Volume [RSV] mean value 71.1±9.3% [95%CI 55.6-89.4], median 72.0), with no signif-icant peak based on different seasons (e.g. winter vs. summer time). When comparing the APS-relateddigital interest with search volumes generated in the same time period for Inherited Thrombophilias (IT)and Systemic Lupus Erythematosus (SLE), we found a digital interest 35-times higher for APS than for IT(RSV mean value 71.1±9.3% [95%CI 55.6-89.4] vs. 2±3.2% [95%CI 0.7-7.4]). When compared to SLE, APSreached a similar RSV, showing a comparable digital interest (RSV mean value 71.1±9.3% [95%CI 55.6-89.4] vs. 87±11.8% [95%CI 60.7-107.9]). When adjusting for relative search volumes of Google Trends,we found a relative prevalence of search volumes of 35.5% in Europe, 12.3% in the United States, 11.5%in South America, 11.2% in Australia, 9.2% in Canada, 9.2% in Japan, and 5.1% in India. We observed anoverall similar distribution of search volumes from Google Trends compared to results from Medline/Pubmed, SCOPUS, and ClinicalTrials.gov. In brief, the United States and Europe (mainly Italy, the UnitedKingdom, Spain, France, and Germany) presented the higher RSV. Similarly, these countries showed ahigher number of research publications and on-going trials in the field of APS.Conclusion: In this study, we demonstrated that the interest in APS is not equally distributed globally.Thus, geopolitical differences might represent a challenge when attempting to estimate the preva-lence of APS or designing worldwide investigations in APS. Combining the expanding framework ofinfodemiology with scientific networking collaborative efforts, such as AntiPhospholipid SyndromeAlliance For Clinical Trials and InternatiOnal Networking (APS ACTION), will help better define thesyndrome in terms of prevalence, event occurrence ratios, and thrombosis risk assessment.