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

Bibliographical note


The author(s) meet criteria for authorship as recommended by the International Committee of Medical Journal Editors (ICMJE). We thank Dr. Alvaro Aranda (Hospital Auxilio Mutuo, San Juan, Puerto Rico) for his scientific and clinical contributions during the drafting of this manuscript. We also thank Dr. Ruth B Murray (OPC, UK) who has substantially contributed to the presentation of information in this article, provided significant intellectual input to the manuscript and final approval of the version to be published. She has agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. Dr. Murray is the founder and director of Medscript Ltd., a company that provided writing and editorial support for APEX COPD publications. Writing, editorial support, and/or formatting assistance was provided by Ms. Audrey Ang (BSc (Hons), Observational and Pragmatic Research
Institute, Singapore) and Dr. Lisa Buttle (PhD, Medscript Ltd, Ireland).
APEX COPD is conducted by Optimum Patient Care (OPC) Global Limited,
and co-funded by OPC Global Ltd and Boehringer Ingelheim Pharmaceuticals, Inc. (BIPI). The author(s) meet criteria for authorship as recommended by the International Committee of Medical Journal Editors (ICMJE). The authors received no direct compensation related to the development of the manuscript. Writing, editorial support, and/or formatting assistance was provided by Ms. Audrey Ang of the Observational and Pragmatic Research Institute, Singapore, and Dr. Lisa
Buttle of Medscript Ltd, Ireland, which was funded by BIPI. BIPI was given the opportunity to review the manuscript for medical and scientific accuracy as well as intellectual property considerations.


  • 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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