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      Providing researchers with online access to NHLBI biospecimen collections: The results of the first six years of the NHLBI BioLINCC program

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          Abstract

          The National Heart, Lung, and Blood Institute (NHLBI), within the United States’ National Institutes of Health (NIH), established the Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC) in 2008 to develop the infrastructure needed to link the contents of the NHLBI Biorepository and the NHLBI Data Repository, and to promote the utilization of these scientific resources by the broader research community. Program utilization metrics were developed to measure the impact of BioLINCC on Biorepository access by researchers, including visibility, program efficiency, user characteristics, scientific impact, and research types. Input data elements were defined and are continually populated as requests move through the process of initiation through fulfillment and publication. This paper reviews the elements of the tracking metrics which were developed for BioLINCC and reports the results for the first six on-line years of the program.

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          Providing Contemporary Access to Historical Biospecimen Collections: Development of the NHLBI Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC)

          Carol Giffen, Leslie Carroll, John Adams … (2015)
          The National Heart, Lung, and Blood Institute (NHLBI), within the United States' National Institutes of Health (NIH), established a Biorepository in 1976 that initially archived biospecimens from population-based blood product safety surveys. It was later expanded to biospecimens from clinical and epidemiological studies in heart, lung, and blood disorders. The NHLBI also established a Data Repository in 2000 to store and distribute study data from NHLBI-sponsored research. The NHLBI Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC) was established in 2008 to develop the infrastructure needed to link the contents of these two related NHLBI Repositories, facilitate access to repository resources, and streamline request processes. Three key program subcomponents were developed simultaneously: 1) the linkage of biospecimen electronic inventory records with their clinical or characterization data; 2) the development and implementation of a website with both public-facing information and private processing workspaces; and 3) the development of processes to maximize efficiency via a web-based system while maintaining workflow control, document tracking, and secure processes. The BioLINCC website was launched on October 1, 2009 with eight biospecimen collections and data from 72 research studies. By the end of the fourth online year, 38 biospecimen collections were linked and posted, and data from 108 research studies had been made available for request. The number of registered users by the end of the fourth online year approached 2600, and continues to show a trend towards an increasing rate of new users per year. BioLINCC has fulfilled 381 requests comprising 851 data collections, as well as 600 teaching dataset requests and 75 data renewal agreements. 154 biospecimen requests comprising 147,388 biospecimens were fulfilled or actively in process. We conclude that the BioLINCC program has been successful in its goal to increase the visibility and utilization of NHLBI biospecimen and data repository resources.
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            How Frequently Do the Results from Completed US Clinical Trials Enter the Public Domain? - A Statistical Analysis of the ClinicalTrials.gov Database

            Hiroki Saito, Christopher J Gill (2014)
            Background Achieving transparency in clinical trials, through either publishing results in a journal or posting results to the ClinicalTrials.gov (CTG) web site, is an essential public health good. However, it remains unknown what proportion of completed studies achieve public disclosure of results (PDOR), or what factors explain these differences. Methods We analyzed data from 400 randomly selected studies within the CTG database that had been listed as ‘completed’ and had at least four years in which to disclose results. Using Kaplan-Meier curves, we calculated times from completion to PDOR (defined as publishing the primary outcomes in a journal and/or posting results to CTG), and identified explanatory variables predicting these outcomes using Cox proportional hazards models. Findings Among the 400 clinical trials, 118 (29.5%) failed to achieve PDOR within four years of completion. The median day from study completion to PDOR among 282 studies (70.5%) that achieved PDOR was 602 days (mean 647 days, SD 454 days). Studies were less likely to achieve PDOR if at earlier stages (phase 2 vs. phase 3/4, adjusted HR 0.60, 95% CI 0.47–0.78), if they only included adult subjects (adjusted HR 0.61, 95% CI 0.45–0.83), involved randomization (adjusted HR 0.62, 95% CI 0.46–0.83), or had smaller sample sizes (≤50 subjects vs. >50, adjusted HR 0.60, 95% CI 0.44–0.83). Industry-funded studies were significantly less likely to be published than non-industry or blended studies (adjusted HR 0.49, 95% CI 0.36–0.66). Conclusions A significant proportion of completed studies did not achieve PDOR within the four years of follow-up, particularly smaller studies at earlier stages of development with industry funding. This constitutes reporting bias and threatens the validity of the clinical research literature in the US.
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              Efficiently Maintaining a National Resource of Historical and Contemporary Biological Collections: The NHLBI Biorepository Model

              Katheryn E. Shea, Elizabeth Wagner, Leah Marchesani … (2017)
              Introduction: Reducing costs by improving storage efficiency has been a focus of the National Heart, Lung, and Blood Institute (NHLBI) Biologic Specimen Repository (Biorepository) and Biologic Specimen and Data Repositories Information Coordinating Center (BioLINCC) programs for several years. Methods: Study specimen profiles were compiled using the BioLINCC collection catalog. Cost assessments and calculations on the return on investments to consolidate or reduce a collection, were developed and implemented. Results: Over the course of 8 months, the NHLBI Biorepository evaluated 35 collections that consisted of 1.8 million biospecimens. A total of 23 collections were selected for consolidation, with a total of 1.2 million specimens located in 21,355 storage boxes. The consolidation resulted in a savings of 4055 boxes of various sizes and 10.2 mechanical freezers (∼275 cubic feet) worth of space. Conclusion: As storage costs in a biorepository increase over time, the development and use of information technology tools to assess the potential advantage and feasiblity of vial consolidation can reduce maintenance expenses.
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                Author and article information

                Contributors
                Helena Kuivaniemi: Role: Editor
                Journal
                Journal ID (nlm-ta): PLoS One
                Journal ID (iso-abbrev): PLoS ONE
                Journal ID (publisher-id): plos
                Journal ID (pmc): plosone
                Title: PLoS ONE
                Publisher: Public Library of Science (San Francisco, CA USA )
                ISSN (Electronic): 1932-6203
                Publication date (Electronic): 14 June 2017
                Publication date Collection: 2017
                Volume: 12
                Issue: 6
                Electronic Location Identifier: e0178141
                Affiliations
                [1 ]Information Management Services, Inc., Calverton, Maryland, United States of America
                [2 ]Translational Blood Science and Resources Branch, Division of Blood Diseases and Resources, National Heart, Lung, and Blood Institute, Bethesda, Maryland, United States of America
                Stellenbosch University Faculty of Medicine and Health Sciences, SOUTH AFRICA
                Author notes

                Competing Interests: The commercial nature of our company does not alter our adherence to PLOS ONE policies on sharing data and materials. The company does not own the work we create under this contract.

                • Conceptualization: CAG ELW.

                • Data curation: JTA DMH SPB LEC.

                • Formal analysis: JTA LEC.

                • Investigation: CAG ELW JTA DMH LAW SPB LEC.

                • Methodology: CAG ELW JTA LEC.

                • Project administration: CAG ELW LEC.

                • Resources: JTA LEC.

                • Software: JTA SPB LEC.

                • Supervision: CAG ELW LAW SPB LEC.

                • Validation: JTA LEC.

                • Visualization: CAG ELW JTA SPB LEC.

                • Writing – original draft: CAG ELW LEC.

                • Writing – review & editing: CAG ELW JTA DMH LAW SPB LEC.

                Author information
                http://orcid.org/0000-0001-5302-6771
                Article
                Publisher ID: PONE-D-17-00265
                DOI: 10.1371/journal.pone.0178141
                PMC ID: 5470669
                PubMed ID: 28614402
                SO-VID: 8f7c6773-7167-4c52-a23a-c59c6b184be0
                License:

                This is an open access article, free of all copyright, and may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose. The work is made available under the Creative Commons CC0 public domain dedication.

                History
                Date received : 3 January 2017
                Date accepted : 8 May 2017
                Page count
                Figures: 4, Tables: 5, Pages: 13
                Funding
                This program is funded under a contract mechanism (HHSN268201400014C) by the US National Institutes of Health/National Heart, Lung, and Blood Institute (NIH/NHLBI). The support provider is Information Management Services, Inc., and as noted in the letter several of the authors including myself are employees of that company. The sole purpose of the contract is to provide analytic, statistical, biomedical, logistical, and web services support to design and maintain the BioLINCC program under the technical direction of NIH/NHLBI scientific staff. These scientific staff, two of whom are listed as co-authors, are fully engaged in program design, data collection and analysis, decision to publish and in the preparation of this particular manuscript. My staff at IMS, Inc., are also fully engaged in these activities in support of the NHLBI BioLINCC initiative as a whole. IMS staff are on the IMS payroll, and as individuals do not receive funding directly from NIH/NHLBI (nor from any other government support contract held by IMS) - IMS provides its services to NIH/NHLBI as a work made for hire.
                Categories
                Subject: Research Article
                Subject: Science Policy
                Subject: Research Funding
                Subject: Research Grants
                Subject: Computer and Information Sciences
                Subject: Computer Software
                Subject: Biology and Life Sciences
                Subject: Anatomy
                Subject: Body Fluids
                Subject: Blood
                Subject: Medicine and Health Sciences
                Subject: Anatomy
                Subject: Body Fluids
                Subject: Blood
                Subject: Biology and Life Sciences
                Subject: Physiology
                Subject: Body Fluids
                Subject: Blood
                Subject: Medicine and Health Sciences
                Subject: Physiology
                Subject: Body Fluids
                Subject: Blood
                Subject: Science Policy
                Subject: Research Funding
                Subject: Institutional Funding of Science
                Subject: Research and Analysis Methods
                Subject: Research Assessment
                Subject: Research Validity
                Subject: Science Policy
                Subject: Research Funding
                Subject: Science Policy
                Subject: Research Funding
                Subject: Government Funding of Science
                Subject: Biology and Life Sciences
                Subject: Anatomy
                Subject: Cardiovascular Anatomy
                Subject: Heart
                Subject: Medicine and Health Sciences
                Subject: Anatomy
                Subject: Cardiovascular Anatomy
                Subject: Heart
                Custom metadata
                Data Availability All relevant data are within the paper and its Supporting Information Files.

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