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绘制到 2030 年全球 PID 进展的路线图——来自 IPOPI 全球利益相关者峰会的会议记录(2023 年 9 月)。

Charting a course for global progress in PIDs by 2030 - proceedings from the IPOPI global multi-stakeholders' summit (September 2023).

机构信息

International Patient Organisation for Primary Immunodeficiencies (IPOPI), Brussels, Belgium.

Department of Clinical Immunology, Health Research Institute of the Hospital Clínico San Carlos/Fundación para la Investigación Biomédica del Hospital Clínico San Carlos (IML and IdISSC), Health Research Institute of the Hospital Clínico San Carlos (IdISSC), Madrid, Spain.

出版信息

Front Immunol. 2024 Jun 27;15:1430678. doi: 10.3389/fimmu.2024.1430678. eCollection 2024.

Abstract

The International Patient Organisation for Primary Immunodeficiencies (IPOPI) held its second Global Multi-Stakeholders' Summit, an annual stimulating and forward-thinking meeting uniting experts to anticipate pivotal upcoming challenges and opportunities in the field of primary immunodeficiency (PID). The 2023 summit focused on three key identified discussion points: (i) How can immunoglobulin (Ig) therapy meet future personalized patient needs? (ii) Pandemic preparedness: what's next for public health and potential challenges for the PID community? (iii) Diagnosing PIDs in 2030: what needs to happen to diagnose better and to diagnose more? Clinician-Scientists, patient representatives and other stakeholders explored avenues to improve Ig therapy through mechanistic insights and tailored Ig preparations/products according to patient-specific needs and local exposure to infectious agents, amongst others. Urgency for pandemic preparedness was discussed, as was the threat of shortage of antibiotics and increasing antimicrobial resistance, emphasizing the need for representation of PID patients and other vulnerable populations throughout crisis and care management. Discussion also covered the complexities of PID diagnosis, addressing issues such as global diagnostic disparities, the integration of patient-reported outcome measures, and the potential of artificial intelligence to increase PID diagnosis rates and to enhance diagnostic precision. These proceedings outline the outcomes and recommendations arising from the 2023 IPOPI Global Multi-Stakeholders' Summit, offering valuable insights to inform future strategies in PID management and care. Integral to this initiative is its role in fostering collaborative efforts among stakeholders to prepare for the multiple challenges facing the global PID community.

摘要

国际原发性免疫缺陷患者组织(IPOPI)举办了第二届全球多方利益相关者峰会,这是一次年度激励性和前瞻性的会议,汇聚了专家,共同预测原发性免疫缺陷(PID)领域即将面临的关键挑战和机遇。2023 年峰会的重点是三个确定的讨论要点:(i)免疫球蛋白(Ig)治疗如何满足未来个性化患者的需求?(ii)大流行防范:公共卫生的下一步是什么,PID 社区可能面临哪些潜在挑战?(iii)2030 年诊断 PID:为了更好地诊断和更多地诊断,需要做些什么?临床科学家、患者代表和其他利益相关者探讨了通过机制见解以及根据患者特定需求和当地接触传染性病原体等来定制 Ig 制剂/产品,从而改善 Ig 治疗的途径。会议还讨论了大流行防范的紧迫性,以及抗生素短缺和抗菌药物耐药性增加的威胁,强调了在危机和护理管理中代表 PID 患者和其他弱势群体的必要性。讨论还涉及 PID 诊断的复杂性,解决了全球诊断差距、患者报告结果测量的整合以及人工智能提高 PID 诊断率和提高诊断精度的潜力等问题。这些会议记录概述了 2023 年 IPOPI 全球多方利益相关者峰会产生的结果和建议,为 PID 管理和护理的未来战略提供了有价值的见解。该倡议的重要作用是促进利益相关者之间的合作努力,为全球 PID 社区面临的多重挑战做好准备。

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