Sharing of Individual Participant Data from Clinical Trials: General Comparison and HIV Use Case.

Mayer CS, Williams N, Gold S, Fung KW, Huser V

AMIA Annu Symp Proc. 2020 Mar 4;2019:647-654.

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Abstract:

Sharing of individual participant data is encouraged by the International Committee of Medical Journal Editors. We analyzed clinical trial registry data from ClinicalTrials.gov (CTG) and determined the proportion of trials sharing de-identified Individual Participant Data (IPD). We looked at 3,138 medical conditions (as Medical Subject Heading terms). Overall, 10.8% of trials with first registration date after December 1, 2015 answered 'Yes' to plan to share de-identified IPD data. This sharing rate ranges between 0% (biliary tract neoplasms) to 72.2% (meningitis, meningococcal) when analyzed by disease that is focus of a study. Via a predictive model, we found that studies that deposited basic summary results data to CTG results registry, large studies and phase 3 interventional studies are most likely to declare intent to share IPD data. As part of an HIV common data element analysis project, we further compared a body of HIV trials (24% sharing rate) to other diseases.

Mayer CS, Williams N, Gold S, Fung KW, Huser V. Sharing of Individual Participant Data from Clinical Trials: General Comparison and HIV Use Case. 
AMIA Annu Symp Proc. 2020 Mar 4;2019:647-654.

PMID | PMCID