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Venous Access: National Guideline and Registry Development (VANGUARD): Advancing Patient-Centered Venous Access Care Through the Development of a National Coordinated Registry Network

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dc.contributor.authorIorga, Andrea
dc.contributor.authorVelezis, Marti J
dc.contributor.authorMarinac-Dabic, Danica
dc.contributor.authorLario, Robert F
dc.contributor.authorHuff, Stanley M
dc.contributor.authorGore, Beth
dc.contributor.authorMermel, Leonard A
dc.contributor.authorBailey, L Charles
dc.contributor.authorSkapik, Julia
dc.contributor.authorWillis, Debi
dc.contributor.authorLee, Robert E
dc.contributor.authorHurst, Frank P
dc.contributor.authorGressler, Laura E
dc.contributor.authorReed, Terrie L
dc.contributor.authorTowbin, Richard
dc.contributor.authorBaskin, Kevin M
dc.date.accessioned2023-12-01T20:33:06Z
dc.date.available2023-12-01T20:33:06Z
dc.date.issued2023-11-24
dc.description.abstractThere are over 8 million central venous access devices inserted each year, many in patients with chronic conditions who rely on central access for life-preserving therapies. Central venous access device–related complications can be life-threatening and add tens of billions of dollars to health care costs, while their incidence is most likely grossly mis- or underreported by medical institutions. In this communication, we review the challenges that impair retention, exchange, and analysis of data necessary for a meaningful understanding of critical events and outcomes in this clinical domain. The difficulty is not only with data extraction and harmonization from electronic health records, national surveillance systems, or other health information repositories where data might be stored. The problem is that reliable and appropriate data are not recorded, or falsely recorded, at least in part because policy, payment, penalties, proprietary concerns, and workflow burdens discourage completeness and accuracy. We provide a roadmap for the development of health care information systems and infrastructure that address these challenges, framed within the context of research studies that build a framework of standardized terminology, decision support, data capture, and information exchange necessary for the task. This roadmap is embedded in a broader Coordinated Registry Network Learning Community, and facilitated by the Medical Device Epidemiology Network, a Public-Private Partnership sponsored by the US Food and Drug Administration, with the scope of advancing methods, national and international infrastructure, and partnerships needed for the evaluation of medical devices throughout their total life cycle.
dc.description.sponsorshipThis work was partially supported by The Assistant Secretary for Planning and Evaluation and Patient-Centered Outcomes Research Trust Fund (PCORTF) of the US Department of Health and Human Services under Interagency Agreement #750119PE060048, through the US Food and Drug Administration Grant (5U01FD005478).
dc.description.urihttps://www.jmir.org/2023/1/e43658/
dc.format.extent14 pages
dc.genrejournal articles
dc.identifier.citationIorga, Andrea, Marti J. Velezis, Danica Marinac-Dabic, Robert F. Lario, Stanley M. Huff, Beth Gore, Leonard A. Mermel, et al. “Venous Access: National Guideline and Registry Development (VANGUARD): Advancing Patient-Centered Venous Access Care Through the Development of a National Coordinated Registry Network.” Journal of Medical Internet Research 25, no. 1 (November 24, 2023): e43658. https://doi.org/10.2196/43658.
dc.identifier.urihttps://doi.org/10.2196/43658
dc.identifier.urihttp://hdl.handle.net/11603/31003
dc.language.isoen_US
dc.publisherJMIR Publications
dc.relation.isAvailableAtThe University of Maryland, Baltimore County (UMBC)
dc.relation.ispartofUMBC Center for Accelerated Real Time Analysis
dc.relation.ispartofUMBC Faculty Collection
dc.rightsThis work was written as part of one of the author's official duties as an Employee of the United States Government and is therefore a work of the United States Government. In accordance with 17 U.S.C. 105, no copyright protection is available for such works under U.S. Law.
dc.rightsPublic Domain Mark 1.0 en
dc.rights.urihttps://creativecommons.org/publicdomain/mark/1.0/
dc.titleVenous Access: National Guideline and Registry Development (VANGUARD): Advancing Patient-Centered Venous Access Care Through the Development of a National Coordinated Registry Network
dc.typeText
dcterms.creatorhttps://orcid.org/0000-0001-7809-9184

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