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2. Oorsuizen

Author

Schers, H. J., van den Hoogen, F. J. A., de Jongh, T.O.H., editor, de Vries, H., editor, Knottnerus, B.J., editor, Keurlings, P.A.J., editor, Damen, J., editor, and Reinders, M.E., editor

Published
2021
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3. Oorsuizen

Author

Schers, H. J., van den Hoogen, F. J. A., de Jongh, drs. T.O.H., editor, de Vries, Prof. dr. H., editor, Grundmeijer, dr. H.G.L.M., editor, and Knottnerus, dr. B.J., editor

Published
2016
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6. POS0078 COMPARING METHOTREXATE MONOTHERAPY WITH METHOTREXATE PLUS LEFLUNOMIDE COMBINATION THERAPY IN PSORIATIC ARTHRITIS: A RANDOMISED, PLACEBO-CONTROLLED, DOUBLE-BLIND CLINICAL TRIAL (COMPLETE-PsA)

Author

Mulder, M. L. M., primary, Vriezekolk, J. E., additional, Van Hal, T., additional, Nieboer, L., additional, Den Broeder, N., additional, De Jong, E. M. G. J., additional, Den Broeder, A., additional, Van den Hoogen, F., additional, Helliwell, P., additional, and Wenink, M., additional

Published
2022
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14. Additional file 4 of Patient involvement in basic rheumatology research at Nijmegen: a three year’s responsive evaluation of added value, pitfalls and conditions for success

Author

de Wit, Maarten P. T., Koenders, M. I., Neijland, Y., van den Hoogen, F. H. J., van der Kraan, P. M., van de Loo, F. A. J., Berkers, H., Lieon, M., van Caam, A., and van den Ende, C.

Abstract

Additional file 4. Road map for patient involvement in basic research (step-by-step plan).

Published
2022
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22. Systemic sclerosis: State of the art on clinical practice guidelines

Author

Smith, V, Scire, C, Talarico, R, Airo, P, Alexander, T, Allanore, Y, Bruni, C, Codullo, V, Dalm, V, De Vries-Bouwstra, J, Della Rossa, A, Distler, O, Galetti, I, Launay, D, Lepri, G, Mathian, A, Mouthon, L, Ruaro, B, Sulli, A, Tincani, A, Vandecasteele, E, Vanhaecke, A, Vanthuyne, M, Van Den Hoogen, F, Van Vollenhoven, R, Voskuyl, A, Zanatta, E, Bombardieri, S, Burmester, G, Eurico, F, Frank, C, Hachulla, E, Houssiau, F, Mueller-Ladner, U, Schneider, M, Van Laar, J, Vieira, A, Cutolo, M, Mosca, M, Matucci-Cerinic, M, Smith V., Scire C. A., Talarico R., Airo P., Alexander T., Allanore Y., Bruni C., Codullo V., Dalm V., De Vries-Bouwstra J., Della Rossa A., Distler O., Galetti I., Launay D., Lepri G., Mathian A., Mouthon L., Ruaro B., Sulli A., Tincani A., Vandecasteele E., Vanhaecke A., Vanthuyne M., Van Den Hoogen F., Van Vollenhoven R., Voskuyl A. E., Zanatta E., Bombardieri S., Burmester G., Eurico F. J., Frank C., Hachulla E., Houssiau F., Mueller-Ladner U., Schneider M., Van Laar J. M., Vieira A., Cutolo M., Mosca M., Matucci-Cerinic M., Smith, V, Scire, C, Talarico, R, Airo, P, Alexander, T, Allanore, Y, Bruni, C, Codullo, V, Dalm, V, De Vries-Bouwstra, J, Della Rossa, A, Distler, O, Galetti, I, Launay, D, Lepri, G, Mathian, A, Mouthon, L, Ruaro, B, Sulli, A, Tincani, A, Vandecasteele, E, Vanhaecke, A, Vanthuyne, M, Van Den Hoogen, F, Van Vollenhoven, R, Voskuyl, A, Zanatta, E, Bombardieri, S, Burmester, G, Eurico, F, Frank, C, Hachulla, E, Houssiau, F, Mueller-Ladner, U, Schneider, M, Van Laar, J, Vieira, A, Cutolo, M, Mosca, M, Matucci-Cerinic, M, Smith V., Scire C. A., Talarico R., Airo P., Alexander T., Allanore Y., Bruni C., Codullo V., Dalm V., De Vries-Bouwstra J., Della Rossa A., Distler O., Galetti I., Launay D., Lepri G., Mathian A., Mouthon L., Ruaro B., Sulli A., Tincani A., Vandecasteele E., Vanhaecke A., Vanthuyne M., Van Den Hoogen F., Van Vollenhoven R., Voskuyl A. E., Zanatta E., Bombardieri S., Burmester G., Eurico F. J., Frank C., Hachulla E., Houssiau F., Mueller-Ladner U., Schneider M., Van Laar J. M., Vieira A., Cutolo M., Mosca M., and Matucci-Cerinic M.

Abstract

Systemic sclerosis (SSc) is an orphan disease characterised by autoimmunity, fibrosis of the skin and internal organs, and vasculopathy. SSc may be associated with high morbidity and mortality. In this narrative review we summarise the results of a systematic literature research, which was performed as part of the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases project, aimed at evaluating existing clinical practice guidelines or recommendations. Only in the domains 'Vascular & Ulcers' (ie, non-pharmacological approach to digital ulcer), 'PAH' (ie, screening and treatment), 'Treatment' and 'Juveniles' (ie, evaluation of juveniles with Raynaud's phenomenon) evidence-based and consensus-based guidelines could be included. Hence there is a preponderance of unmet needs in SSc referring to the diagnosis and (non-)pharmacological treatment of several SSc-specific complications. Patients with SSc experience significant uncertainty concerning SSc-related taxonomy, management (both pharmacological and nonpharmacological) and education. Day-to-day impact of the disease (loss of self-esteem, fatigue, sexual dysfunction, and occupational, nutritional and relational problems) is underestimated and needs evaluation.

Published
2018

26. Improving quality of care in rheumatoid arthritis and associated comorbidities

Author

Kvien, T.K., Balsa, A., Betteridge, N., Buch, M., Dougados, M., Durez, P., Favalli, E., Favier, G., Gabay, C., Geenen, R., Gouni-Berthold, I., van den Hoogen, F., Kent, A., Klareskog, L., Ostergaard, M., Pavelka, K., Polido-Pereira, J., Semb, A.G., Skold, M., Clinical Psychology (onderzoeksprogramma), and Leerstoel Geenen

Abstract

This report presents examples of good practice interventions that aim to improve the quality of life for patients with RA and associated comorbidities in Europe. The KPMG team interviewed rheumatologists and other healthcare professionals in a number of centres involved in RA patient care. In collaboration with a multidisciplinary steering committee, comprised of rheumatologists, comorbidity specialists, a rheumatology nurse and a patient representative, features of good practice were identified across the patient pathway and documented in the report. It outlines practices that promote early diagnosis and support the effective management of RA and associated comorbidities to improve outcomes for patients.

Published
2020

28. Considerations for improving quality of care of patients with rheumatoid arthritis and associated comorbidities

Author

Kvien, T.K., Balsa, A., Betteridge, N., Buch, M., Durez, P., Favalli, E., Favier, G., Gabay, C., Geenen, R., Gouni-Berthold, I., van den Hoogen, F., Kent, A., Klareskog, L., Ostergaard, M., Pavelka, K., Polido-Pereira, J., Semb, A., Skold, M., Dougados, M., Kvien, T.K., Balsa, A., Betteridge, N., Buch, M., Durez, P., Favalli, E., Favier, G., Gabay, C., Geenen, R., Gouni-Berthold, I., van den Hoogen, F., Kent, A., Klareskog, L., Ostergaard, M., Pavelka, K., Polido-Pereira, J., Semb, A., Skold, M., and Dougados, M.

Abstract

Objective: Rheumatoid arthritis (RA) is a chronic autoimmune inflammatory disorder with a global prevalence of approximately 0.5-1%. Patients with RA are at an increased risk of developing comorbidities (eg, cardiovascular disease, pulmonary disease, diabetes and depression). Despite this, there are limited recommendations for the management and implementation of associated comorbidities. This study aimed to identify good practice interventions in the care of RA and associated comorbidities. Methods: A combination of primary research (180+ interviews with specialists across 12 European rheumatology centres) and secondary research (literature review of existing publications and guidelines/recommendations) were used to identify challenges in management and corresponding good practice interventions. Findings were prioritised and reviewed by a group of 18 rheumatology experts including rheumatologists, comorbidity experts, a patient representative and a highly specialised nurse. Results: Challenges throughout the patient pathway (including delays in diagnosis and referral, shortage of rheumatologists, limited awareness of primary care professionals) and 18 good practice interventions were identified in the study. The expert group segmented and prioritised interventions according to three distinct stages of the disease: (1) suspected RA, (2) recent diagnosis of RA and (3) established RA. Examples of good practice interventions included enabling self-management (self-monitoring and disease management support, for example, lifestyle adaptations); early arthritis clinic; rapid access to care (online referral, triage, ultrasound-guided diagnosis); dedicated comorbidity specialists; enhanced communication with primary care (hotline, education sessions); and integrating patient registries into daily clinical practice. Conclusion: Learning from implementation of good practice interventions in centres across Europe provides an opportunity to more widel

Published
2020

29. Improving quality of care in rheumatoid arthritis and associated comorbidities

Author

Clinical Psychology (onderzoeksprogramma), Leerstoel Geenen, Kvien, T.K., Balsa, A., Betteridge, N., Buch, M., Dougados, M., Durez, P., Favalli, E., Favier, G., Gabay, C., Geenen, R., Gouni-Berthold, I., van den Hoogen, F., Kent, A., Klareskog, L., Ostergaard, M., Pavelka, K., Polido-Pereira, J., Semb, A.G., Skold, M., Clinical Psychology (onderzoeksprogramma), Leerstoel Geenen, Kvien, T.K., Balsa, A., Betteridge, N., Buch, M., Dougados, M., Durez, P., Favalli, E., Favier, G., Gabay, C., Geenen, R., Gouni-Berthold, I., van den Hoogen, F., Kent, A., Klareskog, L., Ostergaard, M., Pavelka, K., Polido-Pereira, J., Semb, A.G., and Skold, M.

Published
2020

30. Considerations for improving quality of care of patients with rheumatoid arthritis and associated comorbidities

Author

Clinical Psychology (onderzoeksprogramma), Leerstoel Geenen, Kvien, T.K., Balsa, A., Betteridge, N., Buch, M., Durez, P., Favalli, E., Favier, G., Gabay, C., Geenen, R., Gouni-Berthold, I., van den Hoogen, F., Kent, A., Klareskog, L., Ostergaard, M., Pavelka, K., Polido-Pereira, J., Semb, A., Skold, M., Dougados, M., Clinical Psychology (onderzoeksprogramma), Leerstoel Geenen, Kvien, T.K., Balsa, A., Betteridge, N., Buch, M., Durez, P., Favalli, E., Favier, G., Gabay, C., Geenen, R., Gouni-Berthold, I., van den Hoogen, F., Kent, A., Klareskog, L., Ostergaard, M., Pavelka, K., Polido-Pereira, J., Semb, A., Skold, M., and Dougados, M.

Published
2020

45. Oorsuizen

Author

van de Lisdonk, E. H., primary and van den Hoogen, F. J. A., additional

Published
2007
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48. A large multicentre analysis of CTGF −945 promoter polymorphism does not confirm association with systemic sclerosis susceptibility or phenotype

Author

Rueda, B, Simeon, C, Hesselstrand, R, Herrick, A, Worthington, J, Ortego-Centeno, N, Riemekasten, G, Fonollosa, V, Vonk, M C, van den Hoogen, F H J, Sanchez-Román, J, Aguirre-Zamorano, M A, García-Portales, R, Pros, A, Camps, M T, Gonzalez-Gay, M A, Gonzalez-Escribano, M F, Coenen, M J, Lambert, N, Nelson, J L, Radstake, T R D J, and Martin, J

Published
2009
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50. The challenge of early systemic sclerosis for the EULAR Scleroderma Trial and Research group (EUSTAR) community. It is time to cut the Gordian knot and develop a prevention or rescue strategy

Author

Matucci-Cerinic, M, Allanore, Y, Czirják, L, Tyndall, A, Müller-Ladner, U, Denton, C, Valentini, G, Distler, O, Fligelstone, K, Tyrrel-Kennedy, A, Farge, D, Kowal-Bielecka, O, van den Hoogen, F, Cutolo, M, Sampaio-Barros, P D, Nash, P, Takehara, K, and Furst, D E

Published
2009
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