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

Contributors: Janssen, UCL - SSS/IREC/RUMA - Pôle de Pathologies rhumatismales, UCL - (SLuc) Service de rhumatologie, Faculty of Psychology and Educational Sciences, Faculty of Arts and Philosophy, Brussels Photonics, Vitality Research Group, Clinical sciences, Rheumatology, PE Academic Unit, Electronics and Informatics, Management Informatics, Faculty of Sciences and Bioengineering Sciences, Medical Imaging, Orthopaedics - Traumatology, Gerontology, Dermatology, Data Analytics Lab, Business technology and Operations, Doctoraatsbegeleiding, Data Analytics Laboratory, IR Academic Unit, Rehabilitation and Physiotherapy, Surgical clinical sciences, Physiotherapy, Human Physiology and Anatomy, Pain in Motion, Physical Medicine and Rehabilitation, Faculty of Economic and Social Sciences and Solvay Business School, delcroix, marion/0000-0001-8394-9809, 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.

Source: Acta clinica Belgica, Vol. 79, no.1, p. 26-33 (2024)
Acta clinica Belgica
ACTA CLINICA BELGICA

Subject Terms: systemic sclerosis, INTERSTITIAL LUNG-DISEASE, Systèmes cardiovasculaire & respiratoire, Sciences de la santé humaine, CLASSIFICATION, Medicine, General & Internal, Rare Diseases, Rare Diseases/epidemiology, Lung Diseases, Interstitial/diagnosis, Rheumatology, General & Internal Medicine, Cardiovascular & respiratory systems, European reference networks, patient pathways, Medicine and Health Sciences, CRITERIA, Humans, Connective Tissue Diseases/diagnosis, Human health sciences, Connective Tissue Diseases, 10. No inequality, Connective Tissue Diseases/complications, Rare Diseases/complications, Science & Technology, Scleroderma, Systemic, 3202 Clinical sciences, General Medicine, Scleroderma, Systemic/diagnosis, 3. Good health, Rhumatologie, rare connective tissue diseases, 1101 Medical Biochemistry and Metabolomics, Scleroderma, Systemic/therapy, Scleroderma, Diffuse, Lung Diseases, Interstitial/complications, Human medicine, Lung Diseases, Interstitial/therapy, Rare Diseases/therapy, Lung Diseases, Interstitial, Life Sciences & Biomedicine, Flemish Network of rare diseases

File Description: application/pdf

Access URL: https://pubmed.ncbi.nlm.nih.gov/38108332
https://lirias.kuleuven.be/handle/20.500.12942/732194
https://doi.org/10.1080/17843286.2023.2280737
https://hdl.handle.net/2078.1/293786
https://repository.uantwerpen.be/docstore/d:irua:21372
https://hdl.handle.net/10067/2022140151162165141
https://biblio.vub.ac.be/vubir/(6d2a6341-4d6e-4a6b-a2da-b470c18ce9de).html
http://hdl.handle.net/1942/42106
http://hdl.handle.net/1854/LU-01HP74BJDT1TF5NNMXQR392KB2
https://biblio.ugent.be/publication/01HP74BJDT1TF5NNMXQR392KB2
http://doi.org/10.1080/17843286.2023.2280737
https://biblio.ugent.be/publication/01HP74BJDT1TF5NNMXQR392KB2/file/01HP74C0MZ9AHEPYV1VQPF514Y

Immunological effects of CD19.CAR-T cell therapy in systemic sclerosis: an extended case study

Authors: Claus, Maren, Freitag, Merle, Ewald, Meike, Rodon, Lea, Deicher, Franca, Watzl, Carsten, Kolb, Philipp, Lorenz, Hanns Martin, Schmitt, Michael, Merkt, Wolfgang

Source: Arthritis Res Ther
Arthritis Research & Therapy, Vol 26, Iss 1, Pp 1-8 (2024)

Subject Terms: CAR-T cell therapy, Male, Adult, 0301 basic medicine, NK cells, Diseases of the musculoskeletal system, NKG2A, Immunotherapy, Adoptive, Fcγ receptor, Pulmonary fibrosis, 03 medical and health sciences, 0302 clinical medicine, Humans, Longitudinal Studies, Scleroderma, Systemic, Research, Receptors, IgG, Middle Aged, Flow Cytometry, Female [MeSH], Adult [MeSH], Flow Cytometry [MeSH], Humans [MeSH], Longitudinal Studies [MeSH], Middle Aged [MeSH], CAR T cells in autoimmunity, Receptors, IgG/immunology [MeSH], Immunity, Innate/immunology [MeSH], Male [MeSH], Systemic sclerosis, Scleroderma, Systemic/immunology [MeSH], Killer Cells, Natural/immunology [MeSH], Immunotherapy, Adoptive/methods [MeSH], Scleroderma, Systemic/therapy [MeSH], Immunity, Innate, Killer Cells, Natural, RC925-935, Female

File Description: pdf

Access URL: https://pubmed.ncbi.nlm.nih.gov/39673062
https://doaj.org/article/36e1a80569564abc9a7e8ecb3eb2ee95
https://repository.publisso.de/resource/frl:6521589

Rhumatologie : ce qui a changé en 2022

Authors: Iudici, Michele, Lazarou, Ilias, Nissen, Michael John, Lauper, Kim

Source: Revue Médicale Suisse. 19:239-242

Subject Terms: Scleroderma, Systemic / therapy, 03 medical and health sciences, 0302 clinical medicine, Rheumatology, Arthritis, Rheumatoid / drug therapy, Humans, Lupus Erythematosus, Systemic, Botulinum Toxins, Type A, 3. Good health

File Description: application/pdf

Access URL: https://archive-ouverte.unige.ch/unige:170890
https://doi.org/10.53738/revmed.2023.19.812.239

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, 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

Source: Acta Clinica Belgica, 79 (1), 26 - 33 (2024-02)

Subject Terms: 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

Relation: https://www.tandfonline.com/doi/pdf/10.1080/17843286.2023.2280737; urn:issn:1784-3286; urn:issn:2295-3337

Access URL: https://orbi.uliege.be/handle/2268/311069

Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study

Authors: Kocher, Agnes, Simon, Michael, Dwyer, Andrew A, Blatter, Catherine, Bogdanovic, Jasmina, Künzler-Heule, Patrizia, Villiger, Peter M, Dan, Diana, Distler, Oliver, Walker, Ulrich A, Nicca, Dunja

Contributors: University of Zurich

Source: Orphanet J Rare Dis
Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-17 (2023)
Orphanet journal of rare diseases, vol. 18, no. 1, pp. 7
Kocher, Agnes; Simon, Michael; Dwyer, Andrew A; Blatter, Catherine; Bogdanovic, Jasmina; Künzler-Heule, Patrizia; Villiger, Peter M; Dan, Diana; Distler, Oliver; Walker, Ulrich A; Nicca, Dunja (2023). Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study. Orphanet journal of rare diseases, 18(1), p. 7. BioMed Central 10.1186/s13023-022-02604-2 <http://dx.doi.org/10.1186/s13023-022-02604-2>

Subject Terms: 2716 Genetics (clinical), Scleroderma, Systemic, Patient-centered care, Health-related quality of life, Research, 10051 Rheumatology Clinic and Institute of Physical Medicine, 610 Medicine & health, 10060 Epidemiology, Biostatistics and Prevention Institute (EBPI), Nursing, Humans, Quality of Life, Cross-Sectional Studies, Switzerland, Chronic Disease, Scleroderma, Systemic/therapy, Surveys and Questionnaires, Health services research, Outcome and process assessment, Patient-reported outcome measures, Rare diseases, Rheumatology, Scleroderma, Systemic sclerosis, 3. Good health, 03 medical and health sciences, 0302 clinical medicine, 2736 Pharmacology (medical), Medicine

File Description: application/pdf; ZORA_226119.pdf - application/pdf

Access URL: https://pubmed.ncbi.nlm.nih.gov/36624535
https://doaj.org/article/edcf93b955f742c8b50f474626664643
https://serval.unil.ch/resource/serval:BIB_C250BDAD28FE.P001/REF.pdf
http://nbn-resolving.org/urn/resolver.pl?urn=urn:nbn:ch:serval-BIB_C250BDAD28FE9
https://serval.unil.ch/notice/serval:BIB_C250BDAD28FE
https://edoc.unibas.ch/92349/
https://boris.unibe.ch/177129/

Ten Years of Interventional Research in Systemic Sclerosis: A Systematic Mapping of Trial Registries

Authors: Iudici, Michele, Bafeta, Aïda, Atal, Ignacio, Ravaud, Philippe

Contributors: RIVEROS, Carolina

Source: Arthritis Care and Research, Vol. 72, No 1 (2020) pp. 140-148

Subject Terms: Adult, Male, Clinical Trials as Topic, Scleroderma, Systemic, Adolescent, Disease Management, Middle Aged, 3. Good health, [SDV] Life Sciences [q-bio], Young Adult, 03 medical and health sciences, 0302 clinical medicine, Scleroderma, Systemic/therapy, Humans, Female, Registries, Aged, Forecasting, Retrospective Studies

File Description: application/pdf

Access URL: https://pubmed.ncbi.nlm.nih.gov/30474928
https://hal.science/hal-04381569v1
https://doi.org/10.1002/acr.23817
http://www.ncbi.nlm.nih.gov/pubmed/30474928
https://onlinelibrary.wiley.com/doi/10.1002/acr.23817
https://pubmed.ncbi.nlm.nih.gov/30474928/
https://www.ncbi.nlm.nih.gov/pubmed/30474928
https://europepmc.org/article/MED/30474928
https://archive-ouverte.unige.ch/unige:152587
https://doi.org/10.1002/acr.23817
https://archive-ouverte.unige.ch/unige:152587

Comment s’orienter devant une sclérose cutanée? [What should be done in case of cutaneous sclerosis?]

Authors: Wolff, L., Maniu, C.M., Orte Cano, C., Fossati, C., Bart, P.A.

Source: Revue medicale suisse, vol. 20, no. 896, pp. 2160-2166

Subject Terms: Humans, Scleroderma, Systemic/diagnosis, Scleroderma, Systemic/complications, Scleroderma, Systemic/therapy, Skin Diseases/etiology, Skin Diseases/diagnosis, Skin Diseases/therapy, Skin Diseases/pathology, Sclerosis, Skin/pathology

File Description: application/pdf

Access URL: https://serval.unil.ch/resource/serval:BIB_1ABF64AA59C5.P001/REF.pdf
https://serval.unil.ch/notice/serval:BIB_1ABF64AA59C5
http://nbn-resolving.org/urn/resolver.pl?urn=urn:nbn:ch:serval-BIB_1ABF64AA59C54

Optimal care for systemic sclerosis patients: recommendations from a patient-centered and multidisciplinary mixed-method study and working conference

Authors: Julia Spierings, Cornelia van den Ende, Rita Schriemer, Lian de Pundert, Hein Bernelot Moens, Jaap van Laar, Jeska de Vries-Bouwstra, Madelon Vonk

Contributors: MS Reumatologie/Immunologie/Infectie, Infection & Immunity, Regenerative Medicine and Stem Cells, Child Health

Source: Clinical Rheumatology, 38, 4, pp. 1007-1015

Subject Terms: Male, Consensus, Patient-centered care, Health Personnel, Radboud University Medical Center, 03 medical and health sciences, 0302 clinical medicine, Rheumatology, Patient-Centered Care, Patient-Centered Care/standards, Journal Article, Humans, Quality improvement, Health Services Needs and Demand, Scleroderma, Systemic, Quality Improvement, 3. Good health, Needs assessments, Teamwork, Rheumatology - Radboud University Medical Center, Scleroderma, Systemic/therapy, Radboudumc 5: Inflammatory diseases RIHS: Radboud Institute for Health Sciences, Consensus methods, Systemic sclerosis, Female, Needs Assessment

File Description: image/pdf

Access URL: https://link.springer.com/content/pdf/10.1007/s10067-018-4358-x.pdf
https://pubmed.ncbi.nlm.nih.gov/30448933
https://link.springer.com/article/10.1007/s10067-018-4358-x
https://link.springer.com/content/pdf/10.1007/s10067-018-4358-x.pdf
https://www.narcis.nl/publication/RecordID/oai%3Arepository.ubn.ru.nl%3A2066%2F202410
https://www.infona.pl/resource/bwmeta1.element.springer-doi-10_1007-S10067-018-4358-X
https://dspace.library.uu.nl/handle/1874/387121
https://www.ncbi.nlm.nih.gov/pubmed/30448933
https://dspace.library.uu.nl/handle/1874/387121
https://hdl.handle.net/1887/121045
https://repository.ubn.ru.nl//bitstream/handle/2066/202410/202410.pdf
https://hdl.handle.net/2066/202410

Clinical Presentation and Long-Term Outcomes of Systemic Sclerosis Portuguese Patients from a Single Centre Cohort: A EUSTAR Registration Initiative

Authors: Carolina Vidal, Carina Ruano, Vera Bernardino, Pedro Lavado Carreira, Ana Lladó, Maria Céu Santos, Heidi Gruner, António Panarra, Nuno Riso, Maria Francisca Moraes-Fontes

Source: Acta Médica Portuguesa, Vol 31, Iss 6, Pp 312-320 (2018)

Subject Terms: 2. Zero hunger, Medicine (General), Scleroderma, Systemic, Time Factors, Databases, Factual, Scleroderma, Systemic/mortality, Middle Aged, HCC MED, Severity of Illness Index, Scleroderma, Systemic/diagnosis, Europe, Survival Rate, 03 medical and health sciences, R5-920, Treatment Outcome, 0302 clinical medicine, Scleroderma, Systemic/therapy, HSM IMA, Medicine, Humans, Female, Registries, Aged

Access URL: https://actamedicaportuguesa.com/revista/index.php/amp/article/download/10658/5453
https://pubmed.ncbi.nlm.nih.gov/30020876
https://doaj.org/article/80e85a430c9448ea93b5c0f896c0a2a5
https://europepmc.org/article/MED/30332383
https://doaj.org/article/80e85a430c9448ea93b5c0f896c0a2a5
https://repositorio.chlc.min-saude.pt/handle/10400.17/3038
https://pubmed.ncbi.nlm.nih.gov/30020876/
https://www.ncbi.nlm.nih.gov/pubmed/30020876
https://www.actamedicaportuguesa.com/revista/index.php/amp/article/download/10658/5453
http://hdl.handle.net/10400.17/3038

Indications and application of extracorporeal shockwave therapy / Indikationer og anvendelse af ekstrakorporal shockbölgeterapi

Authors: Skov-Jeppesen, Sune Möller, Lundrup, Ronja Niemann, Ladegaard, Peter Bill Juul, Mortensen, Jonas, Sörensen, Mia Dahl, Lund, Lars

Source: Ugeskrift for Laeger. 181(21):2042

Design and quality considerations for randomized controlled trials in systemic sclerosis

Authors: Maria Kyriakidi, John P. A. Ioannidis

Source: Arthritis Care & Research. 47:73-81

Subject Terms: Male, Quality Control, Scleroderma, Systemic, Time Factors, Databases, Factual, Middle Aged, 3. Good health, 03 medical and health sciences, 0302 clinical medicine, Randomized Controlled Trials as Topic/*methods/standards, Scleroderma, Systemic/*therapy, Double-Blind Method, Research Design, Sample Size, Humans, Female, Research Design/standards/*trends, Randomized Controlled Trials as Topic

Access URL: https://onlinelibrary.wiley.com/doi/pdfdirect/10.1002/art1.10218
https://pubmed.ncbi.nlm.nih.gov/11932881
https://onlinelibrary.wiley.com/doi/10.1002/art1.10218
https://www.onlinelibrary.wiley.com/doi/pdf/10.1002/art1.10218
http://www.ncbi.nlm.nih.gov/pubmed/11932881
http://olympias.lib.uoi.gr/jspui/handle/123456789/22582

[What's new in internal medicine?]

Authors: Laffitte, Emmanuel Alexis

Source: Annales de Dermatologie et de Venereologie, Vol. 141 Suppl 4 (2014) pp. S616-S621

Subject Terms: Skin Diseases/drug therapy/immunology/therapy, Antiphospholipid Syndrome/complications/immunology, Thrombophilia/etiology, Antirheumatic Agents/therapeutic use, Autoimmune Diseases/drug therapy/immunology/therapy, Skin Diseases, Transplantation, Autologous, Autoimmune Diseases, 03 medical and health sciences, 0302 clinical medicine, Internal Medicine, Humans, Thrombophilia, Genetic Predisposition to Disease, Celiac Disease/genetics/immunology, Autoantibodies, ddc:616, Internal Medicine/trends, Biological Products, Scleroderma, Systemic, Hematopoietic Stem Cell Transplantation, Anticoagulants, Antiphospholipid Syndrome, Combined Modality Therapy, 3. Good health, Celiac Disease, Anticoagulants/therapeutic use, Antirheumatic Agents, Scleroderma, Systemic/therapy, Immunosuppressive Agents/therapeutic use, Biological Products/therapeutic use, Autoantibodies/immunology, Immunosuppressive Agents

File Description: application/pdf

Access URL: https://pubmed.ncbi.nlm.nih.gov/25539753
https://archive-ouverte.unige.ch/unige:78090

Systemic sclerosis. Should the care be centralized? / Systemisk sklerose. Bör omsorgen sentraliseres?

Authors: Gran, J T

Source: Tidsskrift for Den Norske Laegeforening. 117(22):3185

Clinical Presentation and Long-Term Outcomes of Systemic Sclerosis Portuguese Patients from a Single Centre Cohort: A EUSTAR Registration Initiative

Estudo Monocêntrico da Apresentação Clínica e Prognóstico a Longo Prazo de Doentes Portugueses com Esclerose Sistémica: uma Iniciativa do Registo EUSTAR

Authors: Vidal, C, Ruano, C, Bernardino, V, Lavado Carreira, P, Lladó, A, Santos, MC, Gruner, H, Panarra, A, Riso, N, Moraes-Fontes, MF

Contributors: Repositório da Unidade Local de Saúde São José

Subject Terms: HSM IMA, HCC MED, Europe, Registries, Scleroderma, Systemic/diagnosis, Scleroderma, Systemic/mortality, Scleroderma, Systemic/therapy, Survival Rate, Time Factors, Treatment Outcome

File Description: application/pdf

Availability: http://hdl.handle.net/10400.17/3038