CHI-RON研究:使用PCORnet®和患者参与策略,改善先天性心脏倡议研究参与者的多样性
Anitha S John1, Scott Leezer2, Lindsey Rudov3
1Children's National Hospital, Washington, DC.
Medical care
|January 8, 2026
概括
患者参与和新的招聘策略显著改善了成人先天性心脏病 (ACHD) 研究的多样性. 这些方法增加了CHI-RON研究中代表性不足的群体的代表性.
科学领域:
- 临床研究 临床研究
- 患者参与 患者参与
- 健康 公平 卫生 公平
背景情况:
- "先天性心脏倡议-重新定义结果和导航到以成年人为中心的护理 (CHI-RON) "研究是一项针对成人先天性心脏病 (ACHD) 患者的患者驱动的注册表.
- 它检查了 ACHD 护理差距对 ACHD 的影响.
- 招募多样化的参与者,包括年轻人,无人照顾者和男性,一直是ACHD研究的持续挑战.
研究的目的:
- 设计和实施患者参与和招聘策略,以提高 ACHD 研究的参与者多样性.
- 改善代表性不足的人群在临床研究中的代表性.
主要方法:
- 该CHI-RON研究使用了患者合作伙伴参与工具包和基于PCORnet®共同数据模型的招聘算法.
- 这些方法从2022年5月到2023年10月在12个PCORnet网站上实施.
- 参与者是18岁或以上的ACHD患者,能够独立完成患者报告的结果.
主要成果:
- 通过CHI-RON招聘方法,招募了2652名参与者,超过了CHI登记册中的1326名自我注册者.
- CHI-RON显著增加了西班牙裔 (10.9%对7.4%),黑人/非洲裔美国人 (5.4%对2.6%) 和男性 (41%对28%) 参与者的代表性.
- 该研究还招募了具有较低教育程度的年轻参与者 (平均年龄为35.5岁与43.5岁),这表明他们的影响范围更广泛.
结论:
- 患者参与和创新的招聘策略对于增加代表性不足的人群在临床研究中的参与至关重要.
- 这些方法确保研究与各种ACHD患者的需求和经验保持一致.
相关概念视频
Patient-centered Care
2.9K
Patient-centered care involves delivering care beyond inpatient hospitalization. Reflective practice can enhance a patient-centered approach. Reflective practice is a process of reasoning that considers all aspects of the present situation, including practicalities, learning from personal practice, and consideration of patient needs. Patients appreciate care decisions made while considering their input. Involving the patient in their care provides the patient with a sense of contribution rather...
2.9K
Coronary Artery Disease V: Interprofessional Care
210
Interprofessional care for coronary artery disease includes pharmacological therapy and revascularization procedures.Pharmacological therapy for Coronary Artery Disease (CAD) aims to manage symptoms, prevent complications, and improve patient outcomes through various classes of medications:Antiplatelet Agents:Aspirin and Clopidogrel: These medications inhibit platelet aggregation, preventing blood clots, which is crucial for avoiding heart attacks and strokes. Doctors often prescribe these...
210
Cardiac Catheterization II: Right Heart Catheterization
791
Right Heart Catheterization: An OverviewRight heart catheterization is an invasive diagnostic procedure that measures right-sided cardiac and pulmonary artery pressures, calculates cardiac output, and identifies intracardiac shunts. It provides detailed hemodynamic data essential for diagnosing and managing various cardiovascular conditions, such as pulmonary hypertension.Access SitesCommon access sites for right heart catheterization include the internal jugular vein in the neck region, the...
791
Coronary Artery Disease IV: Preventive Measures
580
Effective preventive measures for coronary artery disease (CAD) focus on controlling modifiable risk factors, including cholesterol abnormalities and lifestyle changes.Cholesterol ManagementFirst, the Mediterranean diet and the American Heart Association advocate for maintaining low-density lipoprotein (LDL) cholesterol levels below 100 mg/dL, with a more stringent recommendation of below 70 mg/dL for individuals at high risk. LDL cholesterol, often termed "bad cholesterol," can lead to the...
580
Peripheral Artery Disease III: Interprofessional Care
236
Peripheral Artery Disease (PAD) is characterized by narrowed arteries that diminish blood flow to the extremities. Effective management of PAD requires an interprofessional approach involving various healthcare professionals. The critical aspects of interprofessional care for PAD patients focus on risk factor modification, drug therapy, exercise therapy, nutrition therapy, critical limb ischemia care, and interventional radiology and surgical procedures.The primary treatment goal for PAD...
236
Cardiac Catheterization I: Pre-Procedure Overview
1.0K
Cardiac catheterization is an invasive diagnostic technique used to identify and evaluate structural and functional diseases of the heart and major blood vessels. This technique diagnoses congenital heart disease, coronary artery disease, valvular heart disease, and coronary spasms and assesses ventricular function. It helps guide treatment decisions, including the need for revascularization procedures like percutaneous coronary intervention (PCI) or coronary artery bypass grafting (CABG) and...
1.0K


