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Title: | Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken | Authors: | Piette, Y. van den Bossche , F. Aerts , J. Aerts, N. Ajeganova, S. Badot, V. Berghen, N. Blockmans, D. Brusselle, G. Caeyers, N. De Decker, M. De Haes, P. De Cock, C. De Keyser, F. De Langhe, E. Delcroix, M. De Nutte, H. De Pauw, M. Depicker, A. De Sutter, A. De Sutter, J. Du Four, T. Frank, C. Goubau, J. Guiot, J. Gutermuth, J. Heeman, L. Houssiau, F. Hennes, I. Lenaerts , J. Lintermans, A. Loeys, B. Luyten, H. Maeyaert, B. Malfait, F. Moeyersoons, A. Mostmans, Y. Nijs , J. Poppe, B. Polfliet, K. RUTTENS, David Sabato, V. Schoeters , E. Slabbynck, H. Stuer, A. Tamirou, F. THEVISSEN, Kristof Van Kersschaever, G. Vanneuville, B. Van Offel, J. Vanthuyne, M. Van Wabeke, J. Verbist, C. Vos, I. Westhovens, R. Wuyts , W. Yserbyt, J. Smith, V. |
Issue Date: | 2023 | Publisher: | TAYLOR & FRANCIS LTD | Source: | ACTA CLINICA BELGICA, 79 (1) , p. 26 -33 | 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. | Notes: | Smith, V (corresponding author), Univ Ghent, VIB Ctr Inflammat Res IRC, Unit Mol Immunol & Inflammat, Ghent, Belgium. vanessa.smith@ugent.be |
Keywords: | European reference networks;Flemish Network of rare diseases;rare connective tissue diseases;systemic sclerosis;patient pathways | Document URI: | http://hdl.handle.net/1942/42106 | ISSN: | 1784-3286 | e-ISSN: | 2295-3337 | DOI: | 10.1080/17843286.2023.2280737 | ISI #: | 001126890200001 | Rights: | 2023 Ghent University. Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/bync-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent. | Category: | A1 | Type: | Journal Contribution |
Appears in Collections: | Research publications |
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