Data sharing through an NIH central database repository: a cross-sectional survey of BioLINCC users

Objective To characterise experiences using clinical research data shared through the National Institutes of Health (NIH)'s Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC) clinical research data repository, along with data recipients’ perceptions of the value, importance and challenges with using BioLINCC data. Design and setting Cross-sectional web-based survey. Participants All investigators who requested and received access to clinical research data from BioLINCC between 2007 and 2014. Main outcome measures Reasons for BioLINCC data request, research project plans, interactions with original study investigators, BioLINCC experience and other project details. Results There were 536 investigators who requested and received access to clinical research data from BioLINCC between 2007 and 2014. Of 441 potential respondents, 195 completed the survey (response rate=44%); 89% (n=174) requested data for an independent study, 17% (n=33) for pilot/preliminary an...