倾听患者,为患者:COVAD研究愿景,组织结构和挑战
Mrudula Joshi1, Naitica Darooka2, Sreoshy Saha3
1Byramjee Jeejeebhoy Government Medical College and Sassoon General Hospitals, Pune, India.
International journal of rheumatic diseases
|May 9, 2024
概括
针对自身免疫性疾病的COVID-19疫苗接种 (COVAD) 研究强调了国际研究合作面临的挑战. 患者的观点对于了解大流行期间自身免疫性疾病的治疗至关重要.
科学领域:
- 医学研究方法论医学研究方法论.
- 患者报告的结果.
- 自免疫性和类风湿性疾病 (AIRDs)
背景情况:
- COVID-19 流行病对患有自身免疫和类风湿性疾病 (AIRD) 的个人构成了独特的挑战.
- 免疫抑制治疗和疫苗犹进一步复杂的护理为AIRD患者.
- 了解疫情期间患者的经历是必不可少的.
研究的目的:
- 在COVID-19大流行期间收集患者对自身免疫和类风湿性疾病 (AIRD) 的观点.
- 建立一个跨国,多中心的协作努力,使用患者自我报告调查.
- 利用社交媒体作为大规模数据收集的研究工具.
主要方法:
- 在自身免疫性疾病 (COVAD) 中的COVID-19疫苗接种研究中,利用了正在进行的,患者自我报告的调查.
- 使用了经过验证的患者报告结果 (PRO) 和试点测试的调查.
- 数据收集涉及多个国家的AIRD和健康对照 (HC) 患者.
主要成果:
- 该研究遇到了一些挑战,包括协调,数据管理,资金,语言障碍和作者身份.
- 采取了措施来应对这些国际合作项目的挑战.
- 展示了在线平台对以患者为中心的研究的潜力.
结论:
- 协作虚拟模型对于医学研究至关重要,特别是对于罕见疾病.
- 这项COVAD研究强调了将患者观点纳入临床护理的价值.
- 承认患者是平等的利益相关者,可以加强对自身免疫性疾病的研究和护理.
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