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Standardized Data Elements for Patients With Acute Pulmonary Embolism: A Consensus Report From the Pulmonary Embolism Research Collaborative

Circulation, vol. 150, pp. 1140–1150

Abstract

Recent advances in therapy and the promulgation of multidisciplinary pulmonary embolism teams show great promise to improve management and outcomes of acute pulmonary embolism (PE). However, the absence of randomized evidence and lack of consensus leads to tremendous variations in treatment and compromises the wide implementation of new innovations. Moreover, the changing landscape of health care, where quality, cost, and accountability are increasingly relevant, dictates that a broad spectrum of outcomes of care must be routinely monitored to fully capture the impact of modern PE treatment. We set out to standardize data collection in patients with PE undergoing evaluation and treatment, and thus establish the foundation for an expanding evidence base that will address gaps in evidence and inform future care for acute PE. To do so, >100 international PE thought leaders convened in Washington, DC, in April 2022 to form the Pulmonary Embolism Research Collaborative. Participants included physician experts, key members of the US Food and Drug Administration, patient representatives, and industry leaders. Recognizing the multidisciplinary nature of PE care, the Pulmonary Embolism Research Collaborative was created with representative experts from stakeholder medical subspecialties, including cardiology, pulmonology, vascular medicine, critical care, hematology, cardiac surgery, emergency medicine, hospital medicine, and pharmacology. A list of critical evidence gaps was composed with a matching comprehensive set of standardized data elements; these data points will provide a foundation for productive research, knowledge enhancement, and advancement of clinical care within the field of acute PE, and contribute to answering urgent unmet needs in PE management. Evidence produced through the Pulmonary Embolism Research Collaborative, as it is applied to data collection, promises to provide crucial knowledge that will ultimately produce a robust evidence base that will lead to standardization and harmonization of PE management and improved outcomes.

Authors 88

  1. Massachusetts General Hospital

    Affiliation as printed

    Division of Cardiology, Massachusetts General Hospital, Boston (K.R., J.Y.)

  2. Beaumont Health · Beaumont Hospital, Royal Oak

    Affiliation as printed

    Division of Cardiovascular Medicine, Beaumont University Hospital, Corewell Health, Royal Oak, MI (T.R.B.)

  3. University of California, San Francisco

    Affiliation as printed

    Division of Cardiology, University of California, San Francisco (C.F.B.)

  4. University of Kentucky HealthCare · University of Kentucky

    Affiliation as printed

    University of Kentucky HealthCare, University of Kentucky College of Pharmacy, Lexington (G.A.D.)

  5. University of Pennsylvania

    Affiliation as printed

    Cardiovascular Medicine Division, Perelman School of Medicine, University of Pennsylvania, Philadelphia (J.G.)

  6. NYU Langone Health · New York University

    Affiliation as printed

    Langone Health, Department of Medicine, Division of Cardiology, New York University, New York (J.M.H.)

  7. Leiden University Medical Center

    Affiliation as printed

    Department of Medicine—Thrombosis and Hemostasis, Leiden University Medical Center, Netherlands (M.V.H., F.A.K.)

    Dutch Thrombosis Network, Leiden, Netherlands (M.V.H., F.A.K.)

  8. Kings Health Partners

    Affiliation as printed

    Department of Hematology, Kings Healthcare Partners, London, United Kingdom (B.J.H.)

  9. Wayne State University

    Affiliation as printed

    Department of Emergency Medicine, School of Medicine, Wayne State University, Detroit, MI (J.A.K.)

  10. Leiden University Medical Center

    Affiliation as printed

    Department of Medicine—Thrombosis and Hemostasis, Leiden University Medical Center, Netherlands (M.V.H., F.A.K.)

    Dutch Thrombosis Network, Leiden, Netherlands (M.V.H., F.A.K.)

  11. Democritus University of Thrace · University Medical Center of the Johannes Gutenberg University Mainz

    Affiliation as printed

    Center for Thrombosis and Hemostasis, University Medical Center Mainz, Germany (S.V.K.)

    Department of Cardiology, Democritus University of Thrace, Greece (S.V.K.)

  12. Affiliation as printed

    Pulmonary Embolism Response Team Consortium, Nashua, NH (M.T.L., J.L.R.)

  13. Icahn School of Medicine at Mount Sinai

    Affiliation as printed

    Department of Radiology, Icahn School of Medicine at Mount Sinai, New York, NY (R.L.)

  14. University of California, Los Angeles

    Affiliation as printed

    Department of Radiology, David Geffen School of Medicine, University of California, Los Angeles (J.M.M.)

  15. University College Dublin · Royal College of Surgeons in Ireland · Mater Misericordiae University Hospital

    Affiliation as printed

    Division of Hematology, Royal College of Surgeons in Ireland, Dublin (F.N.A.)

    University College Dublin School of Medicine, Mater Misericordiae University Hospital, Ireland (F.N.A.)

  16. Harvard University · Massachusetts General Hospital

    Affiliation as printed

    Department of Medicine, Massachusetts General Hospital and Harvard Medical School, Boston (R.P.R.)

  17. United States Food and Drug Administration

    Affiliation as printed

    US Food and Drug Administration, Silver Spring, MD (S.M.R., E.M.W.)

  18. Beth Israel Deaconess Medical Center

    Affiliation as printed

    Division of Cardiology, Beth Israel Deaconess Medical Center, Boston, MA (E.A.S.)

  19. University Hospital of Wales · Cardiff University

    Affiliation as printed

    Division of Cardiology, University Hospital of Wales and Cardiff University (A.S.P.S.)

  20. Weill Cornell Medicine

    Affiliation as printed

    Department of Radiology, Weill Cornell Medicine, New York, NY (A.K.S.)

  21. University of Pittsburgh · University of Pittsburgh Medical Center

    Affiliation as printed

    Department of Medicine, University of Pittsburgh Medical Center, PA (R.E.S.)

  22. University of Ottawa · Ottawa Hospital

    Affiliation as printed

    Department of Medicine, Ottawa Hospital, University of Ottawa, Canada (P.W.)

  23. Massachusetts General Hospital

    Affiliation as printed

    Division of Cardiology, Massachusetts General Hospital, Boston (K.R., J.Y.)

  24. United States Food and Drug Administration

    Affiliation as printed

    US Food and Drug Administration, Silver Spring, MD (S.M.R., E.M.W.)

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References 41