Advancing the Patient EXperience (APEX) in COPD registry: Study design and strengths

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

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

2 Citations (Scopus)


The Advancing the Patient Experience (APEX) in Chronic Obstructive Pulmonary Disease (COPD) registry (https:// 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.

Original languageEnglish
Pages (from-to)22-31
Number of pages16
JournalJournal of the American Board of Family Medicine
Issue number1
Early online date15 Jan 2021
Publication statusPublished - Feb 2021


  • Primary Care
  • United states
  • Ambulatory Care
  • Chronic Obstructive Pulmonary Disease
  • Delivery of Health Care
  • Registries
  • Patient Reported Outcome Measures
  • Primary Health Care
  • Retrospective Studies
  • Surveys and Questionnaires
  • Patient reported outcome measures
  • Retrospective studies
  • Primary health care
  • Delivery of health care
  • Surveys
  • Questionnaires
  • Chronic obstructive pulmonary disease
  • Ambulatory care
  • Patient Reported Oittcoine Measures


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