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.

Learning Objective: Understand ClinicalTrials.gov data fields and what factors and diseases influence data sharing to make reccomendations to improve data reporting and acquisition processes.


Craig Mayer (Presenter)
National Insitutes of Health

Nick Williams, National Insitutes of Health
Sigfried Gold, National Insitutes of Health
Kin Wah Fung, National Insitutes of Health
Vojtech Huser, National Insitutes of Health

Presentation Materials: