dbGaP Data Access Requests: A Call for Greater Transparency

Walker, Lorelei E.; Starks, Helene; West, Kathleen M.; Fullerton, Stephanie M.

doi:10.1126/scitranslmed.3002788

Cited by 19 publications

(17 citation statements)

References 9 publications

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“…In a 2011 commentary based on the National Center for Biotechnology Information Database of Genotypes and Phenotypes (dbGaP), Walker et al reported on activities during the 2007–2010 period and included 2724 data-access requests from 851 investigators. 16 The principal reason for dbGaP requests involved exploration of new association analysis (39%), followed by methodologic research (26%), replication (18%), and control groups (11%). The dbGaP summary, however, was unable to link requests to subsequent publications.…”

Section: Discussionmentioning

confidence: 99%

Use of the National Heart, Lung, and Blood Institute Data Repository

Coady

Mensah²,

Wagner³

et al. 2017

N Engl J Med

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Background Research on data sharing from clinical trials has focused on elucidating perceptions, barriers, and attitudes among trialists and study participants with respect to sharing data. However, little information exists regarding utilization or associated publication of articles once clinical trial data have been widely shared. Methods We analyzed administrative records of investigator requests for data access, linked publications, and bibliometrics to describe the use of the National Heart, Lung, and Blood Institute data repository. Results From January 2000 through May 2016, a total of 370 investigators requested data from 1 or more clinical trials. Requests for trial data have been increasing, with 195 investigators (53%) initiating requests during the last 4.4 years of the study period. The predominant reason for requesting data was post hoc secondary analysis of new questions (72%), followed by analytic or statistical approaches to clinical trials (9%) and meta-analyses or pooled study research (7%). Of 172 requests with online project descriptions, only 2 requests were initiated for reanalysis of primary-outcome findings. Data from 88 of 100 available clinical trials were requested at least once, and the median time from repository availability to first request was 235 days. A total of 277 articles were published on the basis of data from 47 trials. Citation metrics from 224 articles indicated that half of the publications have cumulative citations that rank in the top 34% normalized for subject category and year of publication. Conclusions Demand for trial data for secondary analysis has been increasing. Requesting data for the a priori purpose of reanalysis or verification of original findings was rare.

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Section: Discussionmentioning

confidence: 99%

Use of the National Heart, Lung, and Blood Institute Data Repository

Coady

Mensah²,

Wagner³

et al. 2017

N Engl J Med

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“…1 One component of NIH policy is the expectation that data from certain types of NIH-funded genetic studies will be deposited into a federal data repository, dbGAP, for sharing with other researchers. 2,3 Once data are submitted to dbGAP, an NIH Data Access Committee consisting of federal employees, reviews researcher applications for data use and determines access based on scientific merit and consistency of proposed research with limitations imposed on the dataset (e.g., scope of informed consent). Requests for dbGAP access largely come from the research community, including academic institutions, governmental, for-profit and nonprofit institutions.…”

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confidence: 99%

“…Requests for dbGAP access largely come from the research community, including academic institutions, governmental, for-profit and nonprofit institutions. 3 This approach, and data sharing more generally, has the goal of increasing the efficiency of the research process and promoting public benefit by maximizing the use of a pooled data resource for future studies. It is viewed as a particularly important tool for genomic research, enabling more rapid development of health-related advances.…”

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confidence: 99%

Exploring pathways to trust: a tribal perspective on data sharing

James

Tsosie

Sahota

et al. 2014

Genetics in Medicine

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National Institutes of Health data-sharing policies aim to maximize public benefit derived from genetic studies by increasing research efficiency and the use of a pooled data resource for future studies. While broad access to data may lead to benefits for populations underrepresented in genetic studies, such as indigenous groups, tribes have ownership interest in their data. The Northwest-Alaska Pharmacogenetic Research Network, a partnership involving tribal organizations and universities conducting basic and translational pharmacogenetic research, convened a meeting to discuss the collection, management, and secondary use of research data, and of the processes surrounding access to data stored in federal repositories. This article reports on tribal perspectives that emerged from the dialogue and discusses the implications of tribal government sovereign status on research agreements and data-sharing negotiations. There is strong tribal support for efficient research processes that expedite the benefits from collaborative research, but there is also a need for data sharing procedures that take into account tribal sovereignty and appropriate oversight of research ¬ such as tribally-based research review processes and review of draft manuscripts. We also note specific ways in which accountability could be encouraged by National Institutes of Health as part of the research process.

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“…We are also beginning to use natural language processing technology from the National Library of Medicine to index text documents and to remove personal identifiers. [50] The priorities in which we take on these new projects are set by our user community; the rate at which they are achieved are based on the availability of funding resources.…”

Section: Discussionmentioning

confidence: 99%

The National Institutes of Health’s Biomedical Translational Research Information System (BTRIS): Design, contents, functionality and experience to date

Cimino

Ayres

Remennik

et al. 2014

Journal of Biomedical Informatics

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The US National Institutes of Health (NIH) has developed the Biomedical Translational Research Information System (BTRIS) to support researchers’ access to translational and clinical data. BTRIS includes a data repository, a set of programs for loading data from NIH electronic health records and research data management systems, an ontology for coding the disparate data with a single terminology, and a set of user interface tools that provide access to identified data from individual research studies and data across all studies from which individually identifiable data have been removed. This paper reports on unique design elements of the system, progress to date and user experience after five years of development and operation.

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dbGaP Data Access Requests: A Call for Greater Transparency

Cited by 19 publications

References 9 publications

Use of the National Heart, Lung, and Blood Institute Data Repository

Use of the National Heart, Lung, and Blood Institute Data Repository

Exploring pathways to trust: a tribal perspective on data sharing

The National Institutes of Health’s Biomedical Translational Research Information System (BTRIS): Design, contents, functionality and experience to date

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