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Updated: Mar 14, 2026
Establishment of a Clinic-based Biorepository
Published on: May 29, 2017
Data sharing through an NIH central database repository: a cross-sectional survey of BioLINCC users
Joseph S Ross1, Jessica D Ritchie2, Emily Finn3
1Center 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.
Investigators utilized the National Institutes of Health (NIH)
Area of Science:
- Biomedical Informatics
- Clinical Research Data Sharing
- Data Repositories
Background:
- The National Institutes of Health (NIH) established the Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC) to facilitate access to valuable clinical research data.
- Understanding how researchers utilize these shared datasets is crucial for optimizing data repository services and promoting scientific discovery.
Purpose of the Study:
- To characterize investigator experiences with clinical research data accessed via the NIH's BioLINCC repository.
- To assess data recipients' perceptions of the value, importance, and challenges associated with using BioLINCC data.
Main Methods:
- A cross-sectional, web-based survey was administered to investigators who accessed BioLINCC data between 2007 and 2014.
- The survey collected information on data request reasons, research plans, interactions with original investigators, and overall experience.
Main Results:
- Of 195 respondents, 89% used BioLINCC data for independent studies, citing feasibility and cost-effectiveness over primary data collection.
- Ninety percent found the data suitable for their projects, with half completing their proposed research, leading to publications in 67% of cases.
- Common challenges included data complexity and organization, though most found the data valuable for new research objectives.
Conclusions:
- Investigators primarily leverage BioLINCC clinical research data for independent studies, enabling research that would be infeasible otherwise.
- The BioLINCC repository effectively supports new research endeavors, highlighting the importance of accessible, well-curated clinical research datasets.
