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.


METHODS
Cross-sectional web-based survey.


METHODS
All investigators who requested and received access to clinical research data from BioLINCC between 2007 and 2014.


METHODS
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 analysis. Commonly cited reasons for requesting data through BioLINCC were feasibility of collecting data of similar size and scope (n=122) and insufficient financial resources for primary data collection (n=76). For 95% of respondents (n=186), a primary research objective was to complete new research, as opposed to replicate prior analyses. Prior to requesting data from BioLINCC, 18% (n=36) of respondents had contacted the original study investigators to obtain data, whereas 24% (n=47) had done so to request collaboration. Nearly all (n=176; 90%) respondents found the data to be suitable for their proposed project; among those who found the data unsuitable (n=19; 10%), cited reasons were data too complicated to use (n=5) and data poorly organised (n=5). Half (n=98) of respondents had completed their proposed projects, of which 67% (n=66) have been published.


CONCLUSIONS
Investigators were primarily using clinical research data from BioLINCC for independent research, making use of data that would otherwise have not been feasible to collect.
Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Connecticut, USA Department of Internal Medicine, Section of General Internal Medicine, Yale School of Medicine, New Haven, Connecticut, USA Department of Internal Medicine, Robert Wood Johnson Foundation Clinical Scholars Program, Yale School of Medicine, New Haven, Connecticut, USA Department of Health Policy and Management, Yale School of Public Health, New Haven, Connecticut, USA.
Joseph S
JS
Ross
Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Connecticut, USA.
Jessica D
JD
Ritchie
Department of Internal Medicine, Section of General Internal Medicine, Yale School of Medicine, New Haven, Connecticut, USA.
Emily
E
Finn
Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Connecticut, USA Department of Internal Medicine, Section of Cardiovascular Medicine, Yale School of Medicine, New Haven, Connecticut, USA.
Nihar R
NR
Desai
Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Connecticut, USA UK Cochrane Center, Oxford, UK.
Richard L
RL
Lehman
Center for Outcomes Research and Evaluation, Yale New Haven Hospital, New Haven, Connecticut, USA Department of Internal Medicine, Robert Wood Johnson Foundation Clinical Scholars Program, Yale School of Medicine, New Haven, Connecticut, USA Department of Health Policy and Management, Yale School of Public Health, New Haven, Connecticut, USA Department of Internal Medicine, Section of Cardiovascular Medicine, Yale School of Medicine, New Haven, Connecticut, USA.
Harlan M
HM
Krumholz
Department of Internal Medicine, Section of General Internal Medicine, Yale School of Medicine, New Haven, Connecticut, USA Department of Internal Medicine, Robert Wood Johnson Foundation Clinical Scholars Program, Yale School of Medicine, New Haven, Connecticut, USA Cancer Outcomes, Public Policy, and Effectiveness Research Center, Yale Cancer Center, New Haven, Connecticut, USA.
Cary P
CP
Gross
PUBLIC HEALTH; STATISTICS & RESEARCH METHODS
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