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