Sciascia Savinio, Radin Massimo, Unlu Ozan, Erkan Doruk, Roccatello Dario
Department of Clinical and Biological Sciences, Center of Research of Immunopathology and Rare Diseases - Coordinating Center of the Network for Rare Diseases of Piedmont and Aosta Valley, University of Turin, Turin, Italy.
Department of Clinical and Biological Sciences, SCDU Nephrology and Dialysis, S. Giovanni Bosco Hospital, University of Turin, Turin, Italy.
Eur J Rheumatol. 2018 Jul;5(2):92-95. doi: 10.5152/eurjrheum.2018.17105. Epub 2018 Jan 22.
To investigate trends in Internet search volumes linked to Antiphospholipid Syndrome (APS), using Big Data monitoring and data mining.
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 on the term "antiphospholipid" in a 5-year web-based research.
Google Trends captured that APS-related digital interest was generally steady in the study period (Relative Search Volume [RSV] mean value 71.1±9.3% [95%CI 55.6-89.4], median 72.0), with no significant peak based on different seasons (e.g. winter vs. summer time). When comparing the APS-related digital 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, APS reached 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 an overall 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 United Kingdom, Spain, France, and Germany) presented the higher RSV. Similarly, these countries showed a higher number of research publications and on-going trials in the field of APS.
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 prevalence of APS or designing worldwide investigations in APS. Combining the expanding framework of infodemiology with scientific networking collaborative efforts, such as AntiPhospholipid Syndrome Alliance For Clinical Trials and InternatiOnal Networking (APS ACTION), will help better define the syndrome in terms of prevalence, event occurrence ratios, and thrombosis risk assessment.
利用大数据监测和数据挖掘技术，研究与抗磷脂综合征（APS）相关的互联网搜索量趋势。
基于谷歌趋势以及科学搜索工具（SCOPUS、Medline/Pubmed和ClinicalTrails.gov）产生的大量数据，我们在一项为期5年的基于网络的研究中，对“抗磷脂”一词进行了纵向分析。
谷歌趋势显示，在研究期间，与APS相关的数字关注度总体稳定（相对搜索量[RSV]平均值为71.1±9.3%[95%置信区间55.6 - 89.4]，中位数为72.0），不同季节（如冬季与夏季）无明显峰值。将与APS相关的数字关注度与同一时期遗传性血栓形成倾向（IT）和系统性红斑狼疮（SLE）产生的搜索量进行比较时，我们发现APS的数字关注度比IT高35倍（RSV平均值71.1±9.3%[95%置信区间55.6 - 89.4] 对比 2±3.2%[95%置信区间0.7 - 7.4]）。与SLE相比，APS的RSV相似，显示出相当的数字关注度（RSV平均值71.1±9.3%[95%置信区间55.6 - 89.4] 对比 87±11.8%[95%置信区间60.7 - 107.9]）。在调整谷歌趋势的相对搜索量后，我们发现欧洲的搜索量相对占比为35.5%，美国为12.3%，南美为11.5%，澳大利亚为11.2%，加拿大为9.2%，日本为9.2%，印度为5.1%。我们观察到，与Medline/Pubmed、SCOPUS和ClinicalTrials.gov的结果相比，谷歌趋势的搜索量总体分布相似。简而言之，美国和欧洲（主要是意大利、英国、西班牙、法国和德国）的RSV较高。同样，这些国家在APS领域的研究出版物数量和正在进行的试验也较多。
在本研究中，我们证明了全球对APS的关注度分布不均。因此，在试图估计APS的患病率或设计全球范围内的APS研究时，地缘政治差异可能是一个挑战。将信息流行病学不断扩展的框架与科学网络协作努力相结合，如抗磷脂综合征临床试验和国际网络联盟（APS ACTION），将有助于在患病率、事件发生率和血栓形成风险评估方面更好地定义该综合征。
