Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken.

IF 1.1 4区 医学 Q2 MEDICINE, GENERAL & INTERNAL
Acta Clinica Belgica Pub Date : 2024-02-01 Epub Date: 2024-01-02 DOI:10.1080/17843286.2023.2280737
Y Piette, F Van den Bossche, J Aerts, N Aerts, S Ajeganova, V Badot, N Berghen, D Blockmans, G Brusselle, N Caeyers, M De Decker, P De Haes, C De Cock, F De Keyser, E De Langhe, M Delcroix, H De Nutte, M De Pauw, A Depicker, A De Sutter, J De Sutter, T Du Four, C Frank, J Goubau, J Guiot, J Gutermuth, L Heeman, F Houssiau, I Hennes, J Lenaerts, A Lintermans, B Loeys, H Luyten, B Maeyaert, F Malfait, A Moeyersoons, Y Mostmans, J Nijs, B Poppe, K Polfliet, D Ruttens, V Sabato, E Schoeters, H Slabbynck, A Stuer, F Tamirou, Kristof Thevissen, G Van Kersschaever, B Vanneuville, J Van Offel, M Vanthuyne, J Van Wabeke, C Verbist, I Vos, R Westhovens, W Wuyts, J Yserbyt, V Smith
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引用次数: 0

Abstract

Despite the low prevalence of each rare disease, the total burden is high. Patients with rare diseases encounter numerous barriers, including delayed diagnosis and limited access to high-quality treatments. In order to tackle these challenges, the European Commission launched the European Reference Networks (ERNs), cross-border networks of healthcare providers and patients representatives. In parallel, the aims and structure of these ERNs were translated at the federal and regional levels, resulting in the creation of the Flemish Network of Rare Diseases. In line with the mission of the ERNs and to ensure equal access to care, we describe as first patient pathways for systemic sclerosis (SSc), as a pilot model for other rare connective and musculoskeletal diseases. Consensus was reached on following key messages: 1. Patients with SSc should have multidisciplinary clinical and investigational evaluations in a tertiary reference expert centre at baseline, and subsequently every three to 5 years. Intermediately, a yearly clinical evaluation should be provided in the reference centre, whilst SSc technical evaluations are permissionably executed in a centre that follows SSc-specific clinical practice guidelines. In between, monitoring can take place in secondary care units, under the condition that qualitative examinations and care including interactive multidisciplinary consultations can be provided. 2. Patients with early diffuse cutaneous SSc, (progressive) interstitial lung disease and/or pulmonary arterial hypertension should undergo regular evaluations in specialised tertiary care reference institutions. 3. Monitoring of patients with progressive interstitial lung disease and/or pulmonary (arterial) hypertension will be done in agreement with experts of ERN LUNG.

弗拉芒罕见结缔组织疾病网络(CTD):系统性硬化症患者路径。已采取的初步措施。
尽管每种罕见病的发病率都很低,但总负担却很重。罕见病患者会遇到许多障碍,包括诊断延误和获得高质量治疗的机会有限。为了应对这些挑战,欧盟委员会启动了欧洲参考网络 (ERN),这是一个由医疗服务提供者和患者代表组成的跨境网络。与此同时,这些欧洲参考网络的目标和结构也在联邦和地区层面得到了体现,弗拉芒罕见病网络由此诞生。根据 ERNs 的使命,并为了确保平等获得医疗服务,我们首先描述了系统性硬化症(SSc)的患者路径,并将其作为其他罕见结缔组织和肌肉骨骼疾病的试点模式。我们就以下关键信息达成了共识:1.1. 系统性硬化症患者应在三级参考专家中心接受多学科临床和研究评估。在此期间,参考中心应每年进行一次临床评估,而 SSc 技术评估则可在遵循 SSc 特定临床实践指南的中心进行。在此期间,可在二级医疗单位进行监测,条件是提供定性检查和护理,包括互动式多学科会诊。2.2. 早期弥漫性皮肤 SSc、(进行性)间质性肺病和/或肺动脉高压患者应在专门的三级医疗机构接受定期评估。3.3. 进展性间质性肺病和/或肺(动脉)高血压患者的监测工作将与 ERN LUNG 的专家协商进行。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Acta Clinica Belgica
Acta Clinica Belgica MEDICINE, GENERAL & INTERNAL-
CiteScore
3.50
自引率
0.00%
发文量
44
期刊介绍: Acta Clinica Belgica: International Journal of Clinical and Laboratory Medicine primarily publishes papers on clinical medicine, clinical chemistry, pathology and molecular biology, provided they describe results which contribute to our understanding of clinical problems or describe new methods applicable to clinical investigation. Readership includes physicians, pathologists, pharmacists and physicians working in non-academic and academic hospitals, practicing internal medicine and its subspecialties.
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