Exploring changes over time and characteristics associated with data retrieval across individual participant data meta-analyses: systematic review

OBJECTIVE: To investigate whether the success rate of retrieving individual participant data (IPD) for use in IPD meta-analyses has increased over time, and to explore the characteristics associated with IPD retrieval. DESIGN: Systematic review of published IPD meta-analyses, supplemented by a reflection of the Cochrane Epilepsy Group’s 20 years’ experience of requesting IPD. DATA SOURCES: Medline, CENTRAL, Scopus, Web of Science, CINAHL Plus, and PsycINFO. ELIGIBILITY CRITERIA FOR STUDY SELECTION: IPD meta-analyses of studies of all designs and all clinical areas published in English. RESULTS: 760 IPD meta-analyses which identified studies by systematic methods that had been published between 1987 and 2015 were included. Only 188 (25%) of these IPD meta-analyses retrieved 100% of the eligible IPD for analysis, with 324 (43%) of these IPD meta-analyses retrieving 80% or more of relevant IPD. There is insufficient evidence to suggest that IPD retrieval rates have improved over time. IPD meta-analyses that included only randomised trials, had an authorship policy, included fewer eligible participants, and were conducted outside of the Cochrane Database of Systematic Reviews were associated with a high or complete IPD retrieval rate. There was no association between the source of funding of the IPD meta-analyses and IPD retrieval rate. The IPD retrieval rate of the Cochrane Epilepsy Group has declined from 83% (up to 2005) to 65% (between 2012 and 2015) and the reported reasons for lack of data availability have changed in recent years. CONCLUSIONS: IPD meta-analyses are considered to be the “gold standard” for the synthesis of data from clinical research studies; however, only 25% of published IPD meta-analyses have had access to all IPD.