Standardized Data Elements for Patients With Acute Pulmonary Embolism: A Consensus Report from the Pulmonary Embolism Research Collaborative
Authors: Kenneth Rosenfield, Terry R. Bowers, Christopher F. Barnett, George A. Davis, Jay Giri, James M. Horowitz, Menno V. Huisman, Beverley J. Hunt, Brent Keeling, Jeffrey A. Kline, Frederikus A. Klok, Stavros V. Konstantinides, Michelle T. Lanno, Robert Lookstein, John M. Moriarty, Fionnuala Ní Áinle, Jamie L. Reed, Rachel P. Rosovsky, Sara M. Royce, Eric A. Secemsky, Andrew S. P. Sharp, Akhilesh K. Sista, Roy E. Smith, Phil Wells, Joanna Yang, Eleni M. Whatley, Tami Abudi, George Adams, Hajira Ahmad, Adebola Ajao, Erin Archard, William Auger, Erika Avila-Tang, Geoff Barnes, Christopher Barnett, Riyaz Bashir, James Benenati, Aaron Berman, Terry Bowers, Michael Buck, Allison Burnett, Scott Cameron, Kenneth Cavanaugh, Michael Cerminaro, Daniel Daniel, Seanna Daves, George Davis, Andrew Dicks, Mahir Elder, Ann Farrell, Alissa Garman, Jamee Gatzemeier, Demetri Giannikopoulos, Michael Gibson, Joshua Goldberg, Carin Gonsalves, Charles Grodzin, Emily Gundert, John Gurley, Gustavo Heresi, Kristen Hlozek, Stephen Hoerst, Brandon Hooks, James Horowitz, Wissam Jaber, Michael Jaff, David Jimenez, Hillary Johnston-Cox, Scott Kaatz, Raghu Kolluri, John Laird, Leslie Lake, Matthew Langston, Steven Lossef, Charles Love, Julie Mackel, Lori Massaro, Michael McDaniel, Vicki McNally, Geno Merli, Bushra Mina, Manuel Monreal, Lisa Moores, Timothy Morris, Fadi Nossair, Gregory O’Connell, Oisin O’Corragain, Kenneth Ouriel, Sahil Parikh, Gregory Piazza, Katie Pohlson, Peter Polverini, Jordan Pomeroy, Steve Pugliese, Brian Pullin, Brian Quinto, Parth Rali, Belinda Rivera-Lebron, Bill Robertson, Bruce Rosengard, Miranda Shaw, Chuck Simonton, Akhilesh Sista, Roy Smith, Alex Spyropoulos, Sanjay Srivastava, Keith Sterling, Jayme Strauss, Margaret Taber, Victor Tapson, Adam Tawney, Thomas Tu, Tom Valent, Venkat Venkat, Elad Walach, Rebecca Ward, Adam Ward, Ido Weinberg, Phil Wells, Frances Mae West, Nick West, Eleni Whatley, Joanna Yang, Charlie Yongpravat
Journal: Circulation (2024)

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.