Data retrieval and harmonisation for individual participant data meta-analysis in the context of a neglected tropical disease: challenges and lessons from the Infectious Diseases Data Observatory visceral leishmaniasis data platform
Abstract
Abstract Introduction Individual participant data meta-analysis (IPD-MA) is the gold-standard approach for evidence synthesis. Poverty-related infectious diseases, a context in which standalone trials often have small sample sizes and consequently observe relatively few treatment failures, can benefit from this approach. Methods In collaboration with the global research community, the Infectious Diseases Data Observatory (IDDO) has developed a data platform for visceral leishmaniasis (VL)—a neglected tropical disease (NTD), primarily to facilitate IPD-MA aimed at addressing questions of public health importance. Initially, a systematic review (SR) was undertaken to identify relevant trials since 1980 and study authors were invited to collaboratively develop the platform and participate in two IPD-MAs. IPD non-retrievability (data loss) was tracked and defined as unsuccessful attempts to contact study authors, or when the authors explicitly stated data loss, or declined participation. Results The SR identified 147 VL trials (1983–2019), of which IPD was shared to the IDDO platform from 31 (21.1%). Reasons for data non-retrievability of 116 studies included: authors’ retirement (n=42, 36.2%), data were lost (n=30, 25.9%), authors’ non-response (n=22, 19.0%), authors were no longer contactable (n=17, 14.7%) and a lack of clarity over data ownership (n=5, 4.3%). The median sample size was 226 (IQR: 120–542, range: 30–1,143) for retrieved studies compared with 81 (IQR: 34–151,…
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Evidence Hub reads this as a meta-analysis, done in people. Its evidence level is 1 of 5 (Highest · pooled evidence). Pooled evidence from several studies sits at the top of the evidence pyramid. Reported size: 42 participants or records.
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