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NYMERIA研究:对系统性红斑狼疮患者疾病及患者相关负担与治疗策略的真实世界、多中心当代评估

The NYMERIA Study: A Real-World, Multicentre Contemporary Assessment of Disease- and Patient-Related Burden and Treatment Strategies in Patients with Systemic Lupus Erythematosus.

作者信息

Bertsias George, Fanouriakis Antonis, Bartsakoulia Marina, Galanakis Petros, Boumpas Dimitrios T

机构信息

Rheumatology and Clinical Immunology, University of Crete Medical School, Heraklion, Greece.

Division of Immunity, Institute of Molecular Biology and Biotechnology-Foundation for Research and Technology - Hellas (FORTH), Heraklion, Greece.

出版信息

Mediterr J Rheumatol. 2024 Jun 30;35(Suppl 2):392-401. doi: 10.31138/mjr.160524.tns. eCollection 2024 Jun.

DOI:10.31138/mjr.160524.tns
PMID:39193181
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11345607/
Abstract

Systemic lupus erythematosus (SLE) has a spectrum of phenotypes. Its management should target remission or low disease activity, prevention of relapses and organ damage, minimisation of drug-related harms, and optimisation of health-related quality of life. Advances in our understanding of the disease pathophysiology have expanded the treatment armamentarium with targeted biologics that demonstrate superiority over conventional drugs in controlling activity, reducing flares and glucocorticoid exposure, and improving patient-related outcomes. In view of this, there is a critical need for real-world evidence providing insight into the spectrum of activity, the treatment landscape, and unmet needs among SLE patients. Such information can support regulatory and reimbursement decision-making. The primary objective of the NYMERIA multicentre study is to generate real-world evidence on the activity state of SLE patients treated in routine care settings in Greece. The overarching aim is to capture the disease burden based on both clinical aspects and the patient perspective.

摘要

系统性红斑狼疮(SLE)具有一系列表型。其治疗应旨在实现缓解或低疾病活动度,预防复发和器官损害,将药物相关危害降至最低,并优化健康相关生活质量。我们对该疾病病理生理学认识的进展扩大了治疗手段,出现了靶向生物制剂,这些生物制剂在控制疾病活动、减少病情复发和糖皮质激素暴露以及改善患者相关结局方面显示出优于传统药物的优势。鉴于此,迫切需要来自真实世界的证据,以深入了解SLE患者的疾病活动谱、治疗现状和未满足的需求。此类信息可为监管和报销决策提供支持。NYMERIA多中心研究的主要目标是生成关于在希腊常规护理环境中接受治疗的SLE患者活动状态的真实世界证据。总体目标是从临床方面和患者角度全面了解疾病负担。

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The NYMERIA Study: A Real-World, Multicentre Contemporary Assessment of Disease- and Patient-Related Burden and Treatment Strategies in Patients with Systemic Lupus Erythematosus.NYMERIA研究:对系统性红斑狼疮患者疾病及患者相关负担与治疗策略的真实世界、多中心当代评估
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本文引用的文献

1
Lupus Low Disease Activity State and organ damage in relation to quality of life in systemic lupus erythematosus: a cohort study with up to 11 years of follow-up.系统性红斑狼疮中狼疮低疾病活动状态及器官损害与生活质量的关系:一项长达11年随访的队列研究
Rheumatology (Oxford). 2025 Feb 1;64(2):639-647. doi: 10.1093/rheumatology/keae120.
2
Physician Global Assessment International Standardisation COnsensus in Systemic Lupus Erythematosus: the PISCOS study.系统性红斑狼疮的医生整体评估国际标准化共识:PISCOS研究
Lancet Rheumatol. 2022 Jun;4(6):e441-e449. doi: 10.1016/S2665-9913(22)00107-2. Epub 2022 May 4.
3
Pragmatic targets for moderate/severe SLE and their implications for clinical care and trial design: sustained DORIS or LLDAS for at least 6 months is sufficient while their attainment for at least 24 months ensures high specificity for damage-free progression.中度/重度系统性红斑狼疮的务实目标及其对临床护理和试验设计的意义:持续达到疾病活动反应指数(DORIS)或低疾病活动状态(LLDAS)至少6个月就足够了,而持续达到至少24个月可确保无损伤进展的高特异性。
Ann Rheum Dis. 2024 Mar 12;83(4):464-474. doi: 10.1136/ard-2023-224919.
4
EULAR recommendations for the management of systemic lupus erythematosus: 2023 update.EULAR 推荐的系统性红斑狼疮治疗:2023 更新版。
Ann Rheum Dis. 2024 Jan 2;83(1):15-29. doi: 10.1136/ard-2023-224762.
5
The global epidemiology of SLE: narrowing the knowledge gaps.系统性红斑狼疮的全球流行病学:缩小知识差距。
Rheumatology (Oxford). 2023 Mar 29;62(Suppl 1):i4-i9. doi: 10.1093/rheumatology/keac610.
6
Lupus low disease activity state attainment in the phase 3 TULIP trials of anifrolumab in active systemic lupus erythematosus.在活动性系统性红斑狼疮的三期 TULIP 临床试验中,阿尼鲁单抗实现狼疮低疾病活动度状态。
Ann Rheum Dis. 2023 May;82(5):639-645. doi: 10.1136/ard-2022-222748. Epub 2023 Jan 23.
7
Clinical response trajectories and drug persistence in systemic lupus erythematosus patients on belimumab treatment: A real-life, multicentre observational study.接受贝利尤单抗治疗的系统性红斑狼疮患者的临床应答轨迹和药物持续时间:一项真实世界、多中心观察性研究。
Front Immunol. 2023 Jan 4;13:1074044. doi: 10.3389/fimmu.2022.1074044. eCollection 2022.
8
Correction: Nikoloudaki et al. Persistence of Depression and Anxiety despite Short-Term Disease Activity Improvement in Patients with Systemic Lupus Erythematosus: A Single-Centre, Prospective Study. 2022, , 4316.更正:尼科洛达基等人。系统性红斑狼疮患者短期疾病活动改善后抑郁和焦虑的持续存在:一项单中心前瞻性研究。2022年,,4316。
J Clin Med. 2022 Dec 28;12(1):227. doi: 10.3390/jcm12010227.
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Sustained glucocorticoid tapering in the phase 3 trials of anifrolumab: a post hoc analysis of the TULIP-1 and TULIP-2 trials.依那西普单抗 3 期临床试验中的持续糖皮质激素减量:TULIP-1 和 TULIP-2 试验的事后分析。
Rheumatology (Oxford). 2023 Apr 3;62(4):1526-1534. doi: 10.1093/rheumatology/keac491.
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Recommendations for Systemic Lupus Erythematosus: Balancing Evidence and Eminence to Facilitate the Medical Care of a Complex Disease.系统性红斑狼疮的推荐意见:权衡证据与权威以促进复杂疾病的医疗照护
Rheum Dis Clin North Am. 2022 Aug;48(3):617-636. doi: 10.1016/j.rdc.2022.05.001. Epub 2022 Jul 5.