دورية أكاديمية
Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken.
| العنوان: | Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken. |
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| المؤلفون: | 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, Julien, 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, D, 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 |
| المصدر: | Acta Clinica Belgica, 79 (1), 26 - 33 (2024-02) |
| بيانات النشر: | Informa UK Limited, 2024. |
| سنة النشر: | 2024 |
| مصطلحات موضوعية: | European reference networks, Flemish Network of rare diseases, patient pathways, rare connective tissue diseases, systemic sclerosis, Humans, Rare Diseases/complications, Rare Diseases/epidemiology, Rare Diseases/therapy, Scleroderma, Systemic/diagnosis, Scleroderma, Systemic/therapy, Connective Tissue Diseases/diagnosis, Connective Tissue Diseases/complications, Lung Diseases, Interstitial/diagnosis, Lung Diseases, Interstitial/therapy, Lung Diseases, Interstitial/complications, Scleroderma, Diffuse, General Medicine, Human health sciences, Cardiovascular & respiratory systems, Rheumatology, Sciences de la santé humaine, Systèmes cardiovasculaire & respiratoire, Rhumatologie |
| الوصف: | 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. |
| نوع الوثيقة: | journal article http://purl.org/coar/resource_type/c_6501 article peer reviewed |
| اللغة: | English |
| Relation: | https://www.tandfonline.com/doi/pdf/10.1080/17843286.2023.2280737; urn:issn:1784-3286; urn:issn:2295-3337 |
| DOI: | 10.1080/17843286.2023.2280737 |
| URL الوصول: | https://orbi.uliege.be/handle/2268/311069 |
| حقوق: | open access http://purl.org/coar/access_right/c_abf2 info:eu-repo/semantics/openAccess |
| رقم الأكسشن: | edsorb.311069 |
| قاعدة البيانات: | ORBi |
| DOI: | 10.1080/17843286.2023.2280737 |
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