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
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.
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, D, Sabato, V, Schoeters, E, Slabbynck, H, Stuer, A, Tamirou, F, Thevissen, K, 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 2024, 'Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken', Acta Clinica Belgica, vol. 79, no. 1, pp. 26-33. https://doi.org/10.1080/17843286.2023.2280737
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., ... Smith, V. (2024). Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken. Acta Clinica Belgica, 79(1), 26-33. https://doi.org/10.1080/17843286.2023.2280737
@article{6d2a63414d6e4a6ba2dab470c18ce9de,
title = "Flemish network on rare connective tissue diseases (CTD): patient pathways in systemic sclerosis. First steps taken",
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.",
keywords = "Humans, Rare Diseases/complications, Scleroderma, Systemic/diagnosis, Connective Tissue Diseases/diagnosis, Lung Diseases, Interstitial/diagnosis, Scleroderma, Diffuse",
author = "Y Piette and {Van den Bossche}, F and J Aerts and N Aerts and S Ajeganova and V Badot and N Berghen and D Blockmans and G Brusselle and N Caeyers and {De Decker}, M and {De Haes}, P and {De Cock}, C and {De Keyser}, F and {De Langhe}, E and M Delcroix and {De Nutte}, H and {De Pauw}, M and A Depicker and {De Sutter}, A and {De Sutter}, J and {Du Four}, T and C Frank and J Goubau and J Guiot and J Gutermuth and L Heeman and F Houssiau and I Hennes and J Lenaerts and A Lintermans and B Loeys and H Luyten and B Maeyaert and F Malfait and A Moeyersoons and Y Mostmans and J Nijs and B Poppe and K Polfliet and D Ruttens and V Sabato and E Schoeters and H Slabbynck and A Stuer and F Tamirou and Kristof Thevissen and {Van Kersschaever}, G and B Vanneuville and {Van Offel}, J and M Vanthuyne and {Van Wabeke}, J and C Verbist and I Vos and R Westhovens and W Wuyts and J Yserbyt and V Smith",
note = "Funding Information: V.S. is supported by an educational grant of Janssen-Cilag NV (EV00351581)V.S. is a Senior Clinical Investigator of the Research FoundationāFlanders (Belgium) (FWO) [1.8.029.20 N] The corresponding author, V. S. is steering committee member of ReCONNET and Chair of the Flemish network on rare connective tissue diseases. We are grateful to the European Reference Network on rare and complex connective tissue and musculoskeletal diseases in which V.S. is steering committee member, disease coordinator of Systemic Sclerosis, national hub healthcare provider representative for the Clinical Patient Management System (CPMS) and Y.P. responsible for the CPMS. Publisher Copyright: {\textcopyright} 2023 Ghent University. Published by Informa UK Limited, trading as Taylor & Francis Group.",
year = "2024",
month = feb,
doi = "10.1080/17843286.2023.2280737",
language = "English",
volume = "79",
pages = "26--33",
journal = "Acta Clinica Belgica",
issn = "1784-3286",
publisher = "Acta Clinica Belgica",
number = "1",
}