Advancing the Patient EXperience (APEX) in COPD Registry: Study Design and Strengths

Barbara P. Yawn, Alan Kaplan, Wilson D. Pace, Janwillem W. H. Kocks, Lakmini Bulathsinhala, Victoria A. Carter, Ku-Lang Chang, Chelsea L. Edwards, Chester Fox, Gabriela Gaona, Gokul Gopalan, MeiLan K. Han, Maja Kruszyk, Chantal E. Le Lievre, Cathy D. Mahle, Barry Make, Zoe K. Philip, Chris Price, Amanda R. Ratigan, Asif ShaikhNeil Skolnik, Brooklyn Stanley, David B. Price*

*Bijbehorende auteur voor dit werk

OnderzoeksoutputAcademicpeer review

1 Citaat (Scopus)

Samenvatting

The Advancing the Patient Experience (APEX) in Chronic Obstructive Pulmonary Disease (COPD) registry (https://www.apexcopd.org/) is the first primary care health system-based COPD registry in the United States. While its ultimate goal is to improve the care of patients diagnosed with COPD, the registry is also designed to describe real-life experiences of people with COPD, track key outcomes longitudinally, and assess the effectiveness of interventions. It will retrospectively and prospectively collect information from 3000 patients enrolled in 5 health care organizations. Information will be obtained from electronic health records, and from extended annual and brief questionnaires completed by patients before clinic visits. Core variables to be collected into the APEX COPD registry were agreed on by Delphi consensus anti fall into 3 domains: demographics, COPD monitoring, and treatment Main strengths of the registry include: 1) its size and scope (in terms of patient numbers, geographic spread and use of multiple information sources including patient-reported information); 2) collection of variables which are clinically relevant and practical to collect within primary care; 3) use of electronic data capture systems to ensure high -quality data and minimization of data-entry requirements; 4) inclusion of clinical, database development, management and communication experts; 5) regular sharing of key findings, both at international/national congresses and in peer-reviewed publications; and 6) a robust organizational structure to ensure continuance of the registry, and that research outputs are ethical, relevant and continue to bring value to both patients and physicians.

Originele taal-2English
Pagina's (van-tot)22+-
Aantal pagina's16
TijdschriftJournal of the American Board of Family Medicine
Volume34
Nummer van het tijdschrift1
DOI's
StatusPublished - 2021

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