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

Abstract

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 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.

COPD Population in US Primary Care: Data From the Optimum Patient Care DARTNet Research Database and the Advancing the Patient Experience in COPD Registry

“…This has been facilitated by the development of standardized data collection methods, use of harmonized definitions to monitor co-morbidity, symptom, and exacerbation burdens, as well as care and treatment of patients with COPD, using both EHR and PRIO data sources. 18,19 The preponderance of smokers or ex-smokers, overweight or obese patients, and high prevalence of comorbidities in our study, and the almost equal distribution of males and females have been reported by others. [24][25][26][27][28] Our prevalence of nonsmokers (12% in both COPD-RD and APEX-COPD) is in agreement with that reported by Celli and colleagues (13%), 29 but lower than that estimated by the Centers for Disease Control and Prevention (25%).…”

“…apexcopd.org/) is the first primary care health system-based COPD registry in the United States. 18,19 It was designed as an observational, primary care initiative which retrospectively and prospectively collects electronic health record (EHR) COPD variables (derived from larger data set-the COPD Optimum Patient Care Research DARTNet Research Database [COPD-RD]). And, unlike other registries, it links these EHR data to patient-reported information/outcomes (PRIO) data and information gathered from COPD patients during primary care visits.…”

“…The primary objectives of the APEX-COPD registry are to describe the primary care COPD population in the United States; to compare the effectiveness of current COPD treatments; and to understand predictors of response to available COPD treatments. 19 To improve COPD management in primary care, it is first necessary to describe the patient population using clinically relevant variables which can be collected practically and monitored longitudinally. The aim of the current study was to describe the demographic and clinical characteristics of COPD patients managed in US primary care using EHR and PRIO-matched variables (ie, APEX-COPD registry) and to assess the generalizability of these data against a large EHRbased COPD registry (ie, the COPD-RD).…”

CONQUEST: A Quality Improvement Program for Defining and Optimizing Standards of Care for Modifiable High-Risk COPD Patients

“…40 OPC also has a well-established track record in COPD research in primary care [41][42][43][44] including the establishment of a COPD patient registry. 45,46 A recent evaluation of a COPD QIP led by OPC demonstrated an overall 20% reduction of COPD exacerbations, compared to 10% in control practices, in the year following implementation. 38 In July 2020, OPC Global, in a collaborative effort with AstraZeneca and the Observational and Pragmatic Research Institute (OPRI), established the COllaboratioN on QUality improvement initiative for achieving Excellence in STandards of COPD care (CONQUEST) program as the first-of-its-kind QIP with data which builds into a collaborative and interventional COPD registry (https://conquest.care/).…”

Development of a real-world database for asthma and COPD: The SingHealth-Duke-NUS-GSK COPD and Asthma Real-World Evidence (SDG-CARE) collaboration

“…There have been a number of well-reported largescale RWD for various clinical care domains, for example, the Clinical Practice Research Datalink (CPRD) which is a primary care database of anonymized medical records [13], European Severe Heterogeneous Asthma Registry, Patient-centred (SHARP) Clinical Research Collaboration [14], UK Severe Asthma Registry (UKSAR) [15], US Advancing the Patient EXperience (APEX) in Chronic Obstructive Pulmonary Disease (COPD) [16] registry amongst others.…”