• Barbara P Yawn, Alan Kaplan, Wilson D Pace, KocksJanwillem W HJWHFrom the University of Minnesota, Minneapolis, MN (BPY); COPD Foundation, Washington DC (BPY); Observational and Pragmatic Research Institute, Singapore, Singapore (AK, JWHK, DBP); Family Physician Airways Group of Canada, Stouffville, 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 Shaikh, Neil Skolnik, Brooklyn Stanley, and David B Price.
• From the University of Minnesota, Minneapolis, MN (BPY); COPD Foundation, Washington DC (BPY); Observational and Pragmatic Research Institute, Singapore, Singapore (AK, JWHK, DBP); Family Physician Airways Group of Canada, Stouffville, Canada (AK); University of Toronto, Toronto, Canada (AK); DARTNet Institute, Aurora, CO (WDP, CF, GGa, ZKP, ARR); University of Colorado, Denver, CO (WDP); General Practitioners Research Institute, Groningen, Netherlands (JWHK); Optimum Patient Care, Cambridge, UK (LB, VAC, CLE, MK, CELL, CP, BS, DBP); College of Medicine, University of Florida, Gainesville, FL (KLC); University at Buffalo, Buffalo, NY (CF); Boehringer Ingelheim, Ridgefield, CT (GGo, CDM, AS); University of Michigan, Ann Arbor, MI (MKH); Department of Medicine, National Jewish Health, Denver, CO (BM); Thomas Jefferson University, Jenkintown, PA (NS); Abington Jefferson Health, Jenkintown, PA (NS); Centre of Academic Primary Care, Division of Applied Health Sciences, University of Aberdeen, Aberdeen, UK (DBP).
• J Am Board Fam Med. 2021 Jan 1; 34 (1): 22-31.

AbstractThe 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 and 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.© Copyright 2021 by the American Board of Family Medicine.

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