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-Feb;34(1):22-31. doi: 10.3122/jabfm.2021.01.200351.
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.
推进慢性阻塞性肺疾病（COPD）患者体验（APEX）注册中心（https://www.apexcopd.org/）是美国首个基于初级保健医疗系统的 COPD 注册中心。虽然其最终目标是改善被诊断为 COPD 的患者的护理，但该注册中心还旨在描述 COPD 患者的真实体验，纵向跟踪关键结果，并评估干预措施的有效性。它将从 5 个医疗保健组织中招募的 3000 名患者中回顾性和前瞻性地收集信息。信息将从电子健康记录中获取，并从患者在就诊前完成的年度和简短扩展问卷中获取。APEX COPD 注册中心将收集的核心变量通过 Delphi 共识达成一致，分为 3 个领域：人口统计学、COPD 监测和治疗。该注册中心的主要优势包括：1）规模和范围（患者人数、地理分布以及使用多种信息来源，包括患者报告信息）；2）收集与初级保健相关且实际可收集的变量；3）使用电子数据采集系统确保高质量的数据和最小的数据录入要求；4）纳入临床、数据库开发、管理和沟通专家；5）定期在国际/全国大会和同行评审出版物上分享主要发现；6）建立稳健的组织结构，以确保注册中心的连续性，并确保研究成果符合伦理道德、具有相关性，并继续为患者和医生带来价值。
