Home Voor zorgverleners Werkgroep SSc

Werkgroep Systemische Sclerose (SSc)

Op deze pagina kunt u meer lezen over de activiteiten van de werkgroep SSc. Hier staat wat de werkgroep precies is, welke centra zijn aangesloten bij de werkgroep, publicaties waar meerdere aangesloten centra bij betrokken zijn geweest, opgestelde consensusdocumenten, informatie over lopend onderzoek, en ten slotte het werkplan voor het huidige jaar.


Introductie

Naast expertiseconsulten voor directe zorgverlening is ARCH ook betrokken bij onderzoek om de zorg voor patiënten met een systemische auto-immuunziekte te verbeteren.

Er is een landelijke multidisciplinaire werkgroep voor SSc. De werkgroep vergadert vier keer per jaar om elkaar te informeren, te brainstormen en af te stemmen over gezamenlijke registratie van klinische kerngegevens, wetenschappelijk onderzoek- en zorgprojecten, en over ontwikkelingen nationaal en internationaal.

In deze werkgroep zitten naast zorgverleners ook patiëntvertegenwoordigers. De deelname van patiëntvertegenwoordigers loopt via de Nationale vereniging voor mensen met lupus, APS, sclerodermie en MCTD (NVLE).

Wie zijn wij?

Udo Mulder, internist-vasculair geneeskundige (UMCG), voorzitter (Voorzitter.WG.SSc@arch.nl)
Judith Potjewijd, internist-klinisch immunoloog (Maastricht UMC), secretaris (Secretaris.WG.SSc@arch.nl)
Anne Schouffoer, reumatoloog, Hagaziekenhuis, secretaris (Secretaris.WG.SSc@arch.nl)

 

De leden van de werkgroep bestaan uit vertegenwoordigers vanuit verschillende organisaties: NVLE, Amsterdam UMC, Elisabeth-Twee Steden Ziekenhuis, Erasmus MC, Franciscus Gasthuis & Vlietland, Hagaziekenhuis, Leiden UMC, Maasstad Ziekenhuis, Maastricht UMC, Slingeland Ziekenhuis, Radboud UMC, Reinier de Graaf Gasthuis, UMC Groningen, UMC Utrecht, en Zuyderland.

Lopend Onderzoek

Leden van de werkgroep coördineren en nemen deel aan verschillende onderzoeken:

  • Horizon LPA-1 antagonist
  • MANUS studie
  • Raynaud studie: UMCG
  • Upside studie: LUMC, Amsterdam UMC, UMCU, en Radboud UMC.

Consensusdocumenten

Met samenwerking van medisch experts, zijn er meerdere gezamenlijke standpunten/ consensusdocumenten opgesteld over SSc. Hieronder staan deze consensusdocumenten benoemd. Deze standpunten zijn niet direct opgesteld door ARCH. Dit zijn documenten waar vertegenwoordigers uit meerdere centra betrokken bij de werkgroep aan mee hebben gewerkt.

Publicaties

Publicaties door de ARCH WG SSc:

 

Publicaties over SSc waar meerdere leden van de de ARCH WG SSc (co-)auteur van zijn (afgelopen 5 jaar):

  1. Untangling the relationship between smoking and systemic sclerosis: an analysis of the EUSTAR cohort. Ciaffi J, Liem SIE, Cannegieter S, Ahmed S, Hoekstra EM, Wiland P, Atsumi T, Szücs G, Balbir Gurman A, Czirják L, Zanatta E, Koetter I, Henes JC, Matucci-Cerinic M, Airò P, Ursini F, Huizinga TWJ, De Vries-Bouwstra J, Collaborators E.RMD Open. 2024 May 20;10(2):e004101. doi: 10.1136/rmdopen-2024-004101.PMID: 38772679
  2. Riociguat in systemic sclerosis: challenges in crossing the bridge from bench to bedside. de Vries-Bouwstra JK.Lancet Rheumatol. 2023 Nov;5(11):e641-e643. doi: 10.1016/S2665-9913(23)00271-0.PMID: 38251528
  3. Peripheral microvascular function is linked to cardiac involvement on cardiovascular magnetic resonance in systemic sclerosis-related pulmonary arterial hypertension. Vos JL, Lemmers JMJ, El Messaoudi S, Snoeren M, van Dijk APJ, Duijnhouwer AL, Rodwell L, van Leuven SI, Post MC, Vonk MC, Nijveldt R.Eur Heart J Cardiovasc Imaging. 2024 Apr 30;25(5):708-717. doi: 10.1093/ehjci/jeae001.PMID: 38170546 .
  4. Performance of DETECT Pulmonary Arterial Hypertension Algorithm According to the Hemodynamic Definition of Pulmonary Arterial Hypertension in the 2022 European Society of Cardiology and the European Respiratory Society Guidelines. Distler O, Bonderman D, Coghlan JG, Denton CP, Grünig E, Khanna D, McLaughlin VV, Müller-Ladner U, Pope JE, Vonk MC, Di Scala L, Lemarie JC, Perchenet L, Hachulla É.Arthritis Rheumatol. 2024 May;76(5):777-782. doi: 10.1002/art.42791. Epub 2024 Apr 2.PMID: 38146100
  5. CD7 activation regulates cytotoxicity-driven pathology in systemic sclerosis, yielding a target for selective cell depletion. Papadimitriou TI, Singh P, van Caam A, Walgreen B, Gorris MAJ, Vitters EL, van Ingen IL, Koenders MI, Smeets RL, Vonk M, de Vries JM, van der Kraan PM, van Oosterhout Y, Huynen MA, Koenen HJPM, Thurlings RM.Ann Rheum Dis. 2024 Mar 12;83(4):488-498. doi: 10.1136/ard-2023-224827.PMID: 38123919
  6. High serum C-X-C motif chemokine ligand 10 (CXCL10) levels may be associated with new onset interstitial lung disease in patients with systemic sclerosis: evidence from observational, clinical, transcriptomic and in vitro studies. Al-Adwi Y, Atzeni IM, Doornbos-van der Meer B, van der Leij MJ, Varkevisser RDM, Kroesen BJ, Stel A, Timens W, Gan CT, van Goor H, Westra J, Mulder DJ.EBioMedicine. 2023 Dec;98:104883. doi: 10.1016/j.ebiom.2023.104883. Epub 2023 Nov 22.PMID: 37995465 .
  7. Sex-specific difference in cardiac function in patients with systemic sclerosis: association with cardiovascular outcomes. Gegenava T, Fortuni F, van Leeuwen NM, Tennoe AH, Hoffmann-Vold AM, Jurcut R, Giuca A, Groseanu L, Tanner F, Distler O, Bax JJ, De Vries-Bouwstra J, Ajmone Marsan N.RMD Open. 2023 Nov;9(4):e003380. doi: 10.1136/rmdopen-2023-003380.PMID: 37949614 .
  8. Does the Impact of COVID-19 on Patients With Systemic Sclerosis Change Over Time? Deibel E, Carreira PE, Vonk M, Del Papa N, Bečvář R, Guillén-Del-Castillo A, Campochiaro C, Poormoghim H, Liem S, Lazzaroni MG, Giollo A, Mekinian A, de Vries-Bouwstra J, De Santis M, Balbir-Gurman A, Mihai C, De Luca G, Moiseev S, Zanatta E, Foti R, Rednic S, Denton C, Cutolo M, Belloli L, Airo P, Garzanova L, Moroncini G, İnanç M, Panopoulos S, Tandaipan JL, Chatelus E, Rosato E, Kuwana M, Yavuz S, Alegre-Sancho JJ, Smith V, Szűcs G, Henes J, Rodríguez-Pintó I, Atzeni F, Spierings J, Truchetet ME, Milchert M, Brito de Araujo D, Riemekasten G, Bernardino V, Martin T, Del Galdo F, Vacca A, Mendoza F, Midtvedt Ø, Murdaca G, Santiago T, Codullo V, Cacciapaglia F, Walker U, Brunborg C, Tirelli F, Allanore Y, Furst DE, Matucci M, Gabrielli A, Distler O, Hoffmann-Vold AM.Arthritis Care Res (Hoboken). 2024 Jan;76(1):88-97. doi: 10.1002/acr.25226. Epub 2023 Dec 11.PMID: 37667424
  9. Anti-topoisomerase, but not anti-centromere B cell responses in systemic sclerosis display active, Ig-secreting cells associated with lung fibrosis. Wortel CM, Liem SI, van Leeuwen NM, Boonstra M, Fehres CM, Stöger L, Huizinga TW, Toes RE, De Vries-Bouwstra J, Scherer HU.RMD Open. 2023 Jul;9(3):e003148. doi: 10.1136/rmdopen-2023-003148.PMID: 37507206 .
  10. Anti-carbamylated protein antibodies in systemic sclerosis. Liem SIE, Hoekstra EM, Levarht EWN, Dorjee AL, Scherer HU, Toes REM, Huizinga TWJ, de Vries-Bouwstra JK, Fehres CM.Arthritis Res Ther. 2023 Jul 21;25(1):123. doi: 10.1186/s13075-023-03099-3.PMID: 37480150 .
  11. The soluble receptor for advanced glycation end products is potentially predictive of pulmonary arterial hypertension in systemic sclerosis. Atzeni IM, Al-Adwi Y, Doornbos-van der Meer B, Roozendaal C, Stel A, van Goor H, Gan CT, Dickinson M, Timens W, Smit AJ, Westra J, Mulder DJ.Front Immunol. 2023 Jun 20;14:1189257. doi: 10.3389/fimmu.2023.1189257. eCollection 2023.PMID: 37409127 .
  12. Association of endothelial to mesenchymal transition and cellular senescence with fibrosis in skin biopsies of systemic sclerosis patients: a cross-sectional study. Chiu YH, Spierings J, van Laar JM, de Vries-Bouwstra JK, van Dijk M, Goldschmeding R.Clin Exp Rheumatol. 2023 Aug;41(8):1612-1617. doi: 10.55563/clinexprheumatol/i49d3o. Epub 2023 Jun 9.PMID: 37382464
  13. Cutaneous Manifestations, Clinical Characteristics, and Prognosis of Patients With Systemic Sclerosis Sine Scleroderma: Data From the International EUSTAR Database. Lescoat A, Huang S, Carreira PE, Siegert E, de Vries-Bouwstra J, Distler JHW, Smith V, Del Galdo F, Anic B, Damjanov N, Rednic S, Ribi C, Bancel DF, Hoffmann-Vold AM, Gabrielli A, Distler O, Khanna D, Allanore Y; EUSTAR collaborators.JAMA Dermatol. 2023 Aug 1;159(8):837-847. doi: 10.1001/jamadermatol.2023.1729.PMID: 37378994 .
  14. Efficacy and Safety of Lenabasum, a Cannabinoid Type 2 Receptor Agonist, in a Phase 3 Randomized Trial in Diffuse Cutaneous Systemic Sclerosis. Spiera R, Kuwana M, Khanna D, Hummers L, Frech TM, Stevens W, Matucci-Cerinic M, Kafaja S, Distler O, Jun JB, Levy Y, Leszcyzński P, Gordon J, Steen V, Lee EB, Jankowski T, Litinsky I, Chung L, Hsu V, Mayes M, Sandorfi N, Simms RW, Finzel S, de Vries-Bouwstra J, Constantine S, Dgetluck N, Dinh Q, Bloom BJ, Furst DE, White B, Denton CP; RESOLVE-1 Study Group.Arthritis Rheumatol. 2023 Sep;75(9):1608-1618. doi: 10.1002/art.42510. Epub 2023 Jun 15.PMID: 37098795  Clinical Trial.
  15. Interstitial Lung Disease: How Should Therapeutics Be Implemented? Bruni C, Campochiaro C, de Vries-Bouwstra JK.Rheum Dis Clin North Am. 2023 May;49(2):279-293. doi: 10.1016/j.rdc.2023.01.005.PMID: 37028835 Review.
  16. Scleroderma Skin: How Is Treatment Best Guided by Data and Implemented in Clinical Practice? Vonk MC, Assassi S, Hoffmann-Vold AM.Rheum Dis Clin North Am. 2023 May;49(2):249-262. doi: 10.1016/j.rdc.2023.01.003.PMID: 37028833 Review.
  17. Step forward in early recognition of systemic sclerosis: data from the Leiden CCISS cohort. Liem SIE, Ciaffi J, van Leeuwen NM, Boonstra M, Ahmed S, Beaart-van de Voorde LJJ, Corsel A, Dhondai T, Ninaber MK, Geelhoed-Veltman JJM, Heuvers ME, Tushuizen ME, Ajmone Marsan N, Kiès P, Schouffoer AA, Huizinga TWJ, Allaart CF, De Vries-Bouwstra J.RMD Open. 2023 Apr;9(2):e002971. doi: 10.1136/rmdopen-2022-002971.PMID: 37028816 .
  18. Whole body insulin sensitivity is increased in systemic sclerosis. Ciaffi J, Ruscitti P, Di Cola I, Pavlych V, Italiano N, Gentile M, Huizinga T, de Vries-Bouwstra JK, Ursini F, Cipriani P.PLoS One. 2023 Mar 30;18(3):e0283283. doi: 10.1371/journal.pone.0283283. eCollection 2023.PMID: 36996012 .
  19. Comment on: Glucocorticoids prescribing practices in systemic sclerosis: an analysis of the EUSTAR database. Ciaffi J, Liem SIE, van Leeuwen NM, Allaart CF, Huizinga TWJ, de Vries-Bouwstra JK.Rheumatology (Oxford). 2023 Aug 1;62(8):e251-e253. doi: 10.1093/rheumatology/kead120.PMID: 36943357
  20. Progression from suspected to definite systemic sclerosis and the role of anti-topoisomerase I antibodies. Liem SIE, Neppelenbroek S, Fehres CM, Wevers BA, Toes REM, Allaart CF, Huizinga TWJ, Scherer HU, De Vries-Bouwstra JK.RMD Open. 2023 Feb;9(1):e002827. doi: 10.1136/rmdopen-2022-002827.PMID: 36746531 .
  21. Nuclear Receptor Subfamily 4A Signaling as a Key Disease Pathway of CD1c+ Dendritic Cell Dysregulation in Systemic Sclerosis. Servaas NH, Hiddingh S, Chouri E, Wichers CGK, Affandi AJ, Ottria A, Bekker CPJ, Cossu M, Silva-Cardoso SC, van der Kroef M, Hinrichs AC, Carvalheiro T, Vazirpanah N, Beretta L, Rossato M, Bonte-Mineur F, Radstake TRDJ, Kuiper JJW, Boes M, Pandit A.Arthritis Rheumatol. 2023 Feb;75(2):279-292. doi: 10.1002/art.42319. Epub 2022 Dec 8.PMID: 36482877 .
  22. Exploring the effects of a combined exercise programme on pain and fatigue outcomes in people with systemic sclerosis: study protocol for a large European multi-centre randomised controlled trial. Mitropoulos A, Boström C, Mattsson M, Kouidi E, Dimitroulas T, Liem SIE, Vlieland TPMV, de Vries-Bouwstra JK, Jacobsen S, Cuomo G, Akil M, Klonizakis M.Trials. 2022 Nov 28;23(1):962. doi: 10.1186/s13063-022-06853-1.PMID: 36443836 .
  23. Sex influence on outcomes of patients with systemic sclerosis-associated interstitial lung disease: a EUSTAR database analysis. Campochiaro C, Hoffmann-Vold AM, Avouac J, Henes J, de Vries-Bouwstra J, Smith V, Siegert E, Airò P, Oksel F, Pellerito R, Vanthuyne M, Pozzi MR, Inanc M, Sibilia J, Gabrielli A, Distler O, Allanore Y; EUSTAR Collaborators.Rheumatology (Oxford). 2023 Jul 5;62(7):2483-2491. doi: 10.1093/rheumatology/keac660.PMID: 36413079
  24. Autoreactive B cell responses targeting nuclear antigens in systemic sclerosis: Implications for disease pathogenesis. Liem SIE, Neppelenbroek S, Fehres CM, Wortel C, Toes REM, Huizinga TWJ, Scherer HU, de Vries-Bouwstra JK.Semin Arthritis Rheum. 2023 Feb;58:152136. doi: 10.1016/j.semarthrit.2022.152136. Epub 2022 Nov 14.PMID: 36403538  Review.
  25. Agreement Between Physician Evaluation and the Composite Response Index in Diffuse Cutaneous Systemic Sclerosis. Zheng B, Wang M, McKenna K, Shapiro L, Silver R, Csuka ME, van den Hoogen F, Robinson D, Pauling JD, Hummers L, Krieg T, Del Galdo F, Spiera R, Jones N, Khalidi N, Vacca A, de Vries-Bouwstra JK, Gordon J, Baron M; Canadian Scleroderma Research Group.Arthritis Care Res (Hoboken). 2022 Nov;74(11):1806-1812. doi: 10.1002/acr.24638. Epub 2022 Jul 12.PMID: 38662853
  26. Stratification in systemic sclerosis according to autoantibody status versus skin involvement: a study of the prospective EUSTAR cohort. Elhai M, Sritharan N, Boubaya M, Balbir-Gurman A, Siegert E, Hachulla E, de Vries-Bouwstra J, Riemekasten G, Distler JHW, Rosato E, Del Galdo F, Mendoza FA, Furst DE, de la Puente C, Hoffmann-Vold AM, Gabrielli A, Distler O, Bloch-Queyrat C, Allanore Y; EUSTAR collaborators.Lancet Rheumatol. 2022 Nov;4(11):e785-e794. doi: 10.1016/S2665-9913(22)00217-X.PMID: 38265945
  27. Improvement of microangiopathy after haematopoietic stem cell transplantation in systemic sclerosis. Boonstra M, Ciaffi J, Noordhoek DC, Liem SIE, Beaart-van de Voorde LJJ, van Bijnen STA, Huizinga TWJ, Vonk MC, de Vries-Bouwstra JK.Clin Exp Rheumatol. 2022 Oct;40(10):1993-1998. doi: 10.55563/clinexprheumatol/5rjvkc. Epub 2022 Oct 17.PMID: 36259604
  28. Systemic sclerosis-associated interstitial lung disease in the EUSTAR database: analysis by region. Lescoat A, Huscher D, Schoof N, Airò P, de Vries-Bouwstra J, Riemekasten G, Hachulla E, Doria A, Rosato E, Hunzelmann N, Montecucco C, Gabrielli A, Hoffmann-Vold AM, Distler O, Ben Shimol J, Cutolo M, Allanore Y; EUSTAR collaborators.Rheumatology (Oxford). 2023 Jun 1;62(6):2178-2188. doi: 10.1093/rheumatology/keac576.PMID: 36222557
  29. Sex-specific risk of anti-topoisomerase antibodies on mortality and disease severity in systemic sclerosis: 10-year analysis of the Leiden CCISS and EUSTAR cohorts. Liem SIE, Boonstra M, le Cessie S, Riccardi A, Airo P, Distler O, Matucci-Cerinic M, Caimmi C, Siegert E, Allanore Y, Huizinga TWJ, Toes REM, Scherer HU, de Vries-Bouwstra JK; EUSTAR collaborators.Lancet Rheumatol. 2022 Oct;4(10):e699-e709. doi: 10.1016/S2665-9913(22)00224-7.PMID: 38265968
  30. Safety and tolerability of nintedanib in patients with interstitial lung diseases in subgroups by sex: a post-hoc analysis of pooled data from four randomised controlled trials. Hoffmann-Vold AM, Volkmann ER, Allanore Y, Assassi S, de Vries-Bouwstra JK, Smith V, Tschoepe I, Loaiza L, Kanakapura M, Distler O.Lancet Rheumatol. 2022 Oct;4(10):e679-e687. doi: 10.1016/S2665-9913(22)00215-6.PMID: 38265966
  31. Continued treatment with nintedanib in patients with systemic sclerosis-associated interstitial lung disease: data from SENSCIS-ON. Allanore Y, Vonk MC, Distler O, Azuma A, Mayes MD, Gahlemann M, James A, Kohlbrenner V, Alves M, Khanna D, Highland KB; SENSCIS-ON trial investigators.Ann Rheum Dis. 2022 Dec;81(12):1722-1729. doi: 10.1136/ard-2022-222564. Epub 2022 Aug 16.PMID: 35973804 .
  32. Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network hand exercise program (SPIN-HAND). Kwakkenbos L, Carrier ME, Welling J, Turner KA, Cumin J, Pépin M, van den Ende C, Schouffoer AA, Hudson M, van Breda W, Sauve M, Mayes MD, Malcarne VL, Nielson WR, Nguyen C, Boutron I, Rannou F, Thombs BD, Mouthon L; SPIN Investigators.PeerJ. 2022 Aug 4;10:e13471. doi: 10.7717/peerj.13471. eCollection 2022.PMID: 35945943 . Clinical Trial.
  33. Use of platelet inhibitors for digital ulcers related to systemic sclerosis: EUSTAR study on derivation and validation of the DU-VASC model. Garaiman A, Steigmiller K, Gebhard C, Mihai C, Dobrota R, Bruni C, Matucci-Cerinic M, Henes J, de Vries-Bouwstra J, Smith V, Doria A, Allanore Y, Dagna L, Anić B, Montecucco C, Kowal-Bielecka O, Martin M, Tanaka Y, Hoffmann-Vold AM, Held U, Distler O, Becker MO; EUSTAR Collaborators.Rheumatology (Oxford). 2023 Feb 6;62(SI):SI91-SI100. doi: 10.1093/rheumatology/keac405.PMID: 35904554
  34. Positron Emission Tomography to Improve Assessment of Interstitial Lung Disease in Patients With Systemic Sclerosis Eligible for Autologous Stem Cell Transplantation. Broens B, van der Laken CJ, Zwezerijnen GJC, Nossent EJ, Meijboom LJ, Spierings J, de Vries-Bouwstra JK, van Laar JM, Voskuyl AE.Front Immunol. 2022 Jul 5;13:923869. doi: 10.3389/fimmu.2022.923869. eCollection 2022.PMID: 35865521 .
  35. Macrophages as determinants and regulators of fibrosis in systemic sclerosis. Al-Adwi Y, Westra J, van Goor H, Burgess JK, Denton CP, Mulder DJ.Rheumatology (Oxford). 2023 Feb 1;62(2):535-545. doi: 10.1093/rheumatology/keac410.PMID: 35861385 .
  36. Biological and clinical insights from a randomized phase 2 study of an anti-oncostatin M monoclonal antibody in systemic sclerosis. Denton CP, Del Galdo F, Khanna D, Vonk MC, Chung L, Johnson SR, Varga J, Furst DE, Temple J, Zecchin C, Csomor E, Lee A, Wisniacki N, Flint SM, Reid J.Rheumatology (Oxford). 2022 Dec 23;62(1):234-242. doi: 10.1093/rheumatology/keac300.PMID: 35583273 . Clinical Trial.
  37. Health-related quality of life in patients with mixed connective tissue disease: a comparison with matched systemic sclerosis patients. Abouyahya I, Liem SIE, Amoura Z, Fonseca JE, Chaigne B, Cutolo M, Doria A, Fischer-Betz R, Guimaraes V, Huizinga TWJ, van Laar JM, Martin T, Matucci-Cerinic M, Montecucco C, Schneider M, Smith V, Müller-Ladner U, de Vries-Bouwstra JK.Clin Exp Rheumatol. 2022 May;40 Suppl 134(5):66-70. doi: 10.55563/clinexprheumatol/x5aras. Epub 2022 May 2.PMID: 35579094
  38. Evaluation of left cardiac chamber function with cardiac magnetic resonance and association with outcome in patients with systemic sclerosis. Butcher SC, Vos JL, Fortuni F, Galloo X, Liem SIE, Bax JJ, Delgado V, Vonk MC, van Leuven SI, Snoeren M, El Messaoudi S, de Vries-Bouwstra JK, Nijveldt R, Ajmone Marsan N.Rheumatology (Oxford). 2023 Feb 6;62(SI):SI20-SI31. doi: 10.1093/rheumatology/keac256.PMID: 35482539 .
  39. The effect of silver fibre gloves on Raynaud’s phenomenon in patients with systemic sclerosis: a double-blind randomized crossover trial. Liem SIE, Hoekstra EM, Bonte-Mineur F, Magro Checa C, Schouffoer A, Allaart CF, Huizinga TWJ, Bergstra SA, de Vries-Bouwstra JK.Rheumatology (Oxford). 2023 Feb 6;62(SI):SI74-SI81. doi: 10.1093/rheumatology/keac243.PMID: 35441683 . Clinical Trial.
  40. Sjögren’s syndrome and other rare and complex connective tissue diseases: an intriguing liaison. Baldini C, Arnaud L, Avčin T, Beretta L, Bellocchi C, Bouillot C, Burmester GR, Cavagna L, Cutolo M, de Vries-Bouwstra JK, Doria A, Ferro F, Fonseca JE, Fonzetti S, Fulvio G, Galetti I, Gottenberg JE, Hachulla E, Krieg T, La Rocca G, Martin T, Matucci-Cerinic M, Moinzadeh P, Montecucco C, Mosca M, Mouthon L, Müller-Ladner U, Rednic S, Smith V, Talarico R, van Laar JM, Vieira A, Romão VC, Mariette X.Clin Exp Rheumatol. 2022 May;40 Suppl 134(5):103-112. doi: 10.55563/clinexprheumatol/3y0hqs. Epub 2022 Mar 21.PMID: 35349420  Review.
  41. Gastrointestinal symptom severity and progression in systemic sclerosis. van Leeuwen NM, Boonstra M, Fretheim H, Brunborg C, Midtvedt Ø, Garen T, Molberg Ø, Huizinga TWJ, de Vries-Bouwstra JK, Hoffman-Vold AM.Rheumatology (Oxford). 2022 Oct 6;61(10):4024-4034. doi: 10.1093/rheumatology/keac118.PMID: 35238377 .
  42. Three Cases of Systemic Sclerosis Within One Family With Different Antibodies and Clinical Features. Spierings J, Ong VH, Denton CP.J Rheumatol. 2022 May;49(5):544-546. doi: 10.3899/jrheum.211139. Epub 2022 Feb 15.PMID: 35169060
  43. Fibroblast Activation Protein Targeted Photodynamic Therapy Selectively Kills Activated Skin Fibroblasts from Systemic Sclerosis Patients and Prevents Tissue Contraction. Dorst DN, van Caam APM, Vitters EL, Walgreen B, Helsen MMA, Klein C, Gudi S, Wubs T, Kumari J, Vonk MC, van der Kraan PM, Koenders MI.Int J Mol Sci. 2021 Nov 24;22(23):12681. doi: 10.3390/ijms222312681.PMID: 34884484 .
  44. Pharmacological treatments for SSc-ILD: Systematic review and critical appraisal of the evidence. Vonk MC, Smith V, Sfikakis PP, Cutolo M, Del Galdo F, Seibold JR.Autoimmun Rev. 2021 Dec;20(12):102978. doi: 10.1016/j.autrev.2021.102978. Epub 2021 Oct 28.PMID: 34718159  Review.
  45. A Drug-Drug Interaction Study to Investigate the Effect of Nintedanib on the Pharmacokinetics of Microgynon (Ethinylestradiol and Levonorgestrel) in Female Patients with Systemic Sclerosis-Associated Interstitial Lung Disease. Vonk MC, Guillén-Del-Castillo A, Kreuter M, Avis M, Marzin K, Mack SR, Wind S, Gahlemann M.Eur J Drug Metab Pharmacokinet. 2022 Jan;47(1):81-89. doi: 10.1007/s13318-021-00728-7. Epub 2021 Oct 18.PMID: 34664183 .
  46. Hypoxia and TLR9 activation drive CXCL4 production in systemic sclerosis plasmacytoid dendritic cells via mtROS and HIF-2α. Ottria A, Zimmermann M, Paardekooper LM, Carvalheiro T, Vazirpanah N, Silva-Cardoso S, Affandi AJ, Chouri E, V D Kroef M, Tieland RG, Bekker CPJ, Wichers CGK, Rossato M, Mocholi-Gimeno E, Tekstra J, Ton E, van Laar JM, Cossu M, Beretta L, Garcia Perez S, Pandit A, Bonte-Mineur F, Reedquist KA, van den Bogaart G, Radstake TRDJ, Marut W.Rheumatology (Oxford). 2022 May 30;61(6):2682-2693. doi: 10.1093/rheumatology/keab532.PMID: 34559222
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  50. Evidence and consensus-based recommendations for non-pharmacological treatment of fatigue, hand function loss, Raynaud’s phenomenon and digital ulcers in patients with systemic sclerosis. Stöcker JK, Schouffoer AA, Spierings J, Schriemer MR, Potjewijd J, de Pundert L, van den Hoogen FHJ, Nijhuis-van der Sanden MWG, Staal JB, Satink T, Vonk MC, van den Ende CHM; Arthritis Research and Collaboration Hub study group.Rheumatology (Oxford). 2022 Apr 11;61(4):1476-1486. doi: 10.1093/rheumatology/keab537.PMID: 34260723 .
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  54. Anticentromere Antibody Levels and Isotypes and the Development of Systemic Sclerosis. van Leeuwen NM, Boonstra M, Bakker JA, Grummels A, Jordan S, Liem S, Distler O, Hoffmann-Vold AM, Melsens K, Smith V, Truchetet ME, Scherer HU, Toes R, Huizinga TWJ, de Vries-Bouwstra JK.Arthritis Rheumatol. 2021 Dec;73(12):2338-2347. doi: 10.1002/art.41814. Epub 2021 Nov 2.PMID: 34042326 .
  55. Representativeness of systemic sclerosis patients in interventional randomized trials: an analysis of the EUSTAR database. Iudici M, Jarlborg M, Lauper K, Müller-Ladner U, Smith V, Allanore Y, Balbir-Gurman A, Doria A, Airò P, Walker UA, Riccieri V, Vonk MC, Gabrielli A, Hoffmann-Vold AM, Szücs G, Martin T, Distler O, Courvoisier DS; EUSTAR collaborators.Rheumatology (Oxford). 2022 Feb 2;61(2):743-755. doi: 10.1093/rheumatology/keab437.PMID: 33989387
  56. Breathomics to diagnose systemic sclerosis using thermal desorption and comprehensive two-dimensional gas chromatography high-resolution time-of-flight mass spectrometry. Zanella D, Guiot J, Stefanuto PH, Giltay L, Henket M, Guissard F, André B, Malaise M, Potjewijd J, Schleich F, Louis R, Focant JF.Anal Bioanal Chem. 2021 Jun;413(14):3813-3822. doi: 10.1007/s00216-021-03333-4. Epub 2021 Apr 26.PMID: 33903944
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  59. Natural variability in the disease course of SSc-ILD: implications for treatment. Vonk MC, Walker UA, Volkmann ER, Kreuter M, Johnson SR, Allanore Y.Eur Respir Rev. 2021 Mar 24;30(159):200340. doi: 10.1183/16000617.0340-2020. Print 2021 Mar 31.PMID: 33762426 . Review.
  60. A randomised, open-label trial to assess the optimal treatment strategy in early diffuse cutaneous systemic sclerosis: the UPSIDE study protocol. Spierings J, van Rhenen A, Welsing PM, Marijnissen AC, De Langhe E, Del Papa N, Dierickx D, Gheorghe KR, Henes J, Hesselstrand R, Kerre T, Ljungman P, van de Loosdrecht AA, Marijt EW, Mayer M, Schmalzing M, Schroers R, Smith V, Voll RE, Vonk MC, Voskuyl AE, de Vries-Bouwstra JK, Walker UA, Wuttge DM, van Laar JM.BMJ Open. 2021 Mar 18;11(3):e044483. doi: 10.1136/bmjopen-2020-044483.PMID: 33737437 .
  61. Severe thrombotic microangiopathy after autologous stem cell transplantation in systemic sclerosis: a case report. Sharif MO, Leavis HL, van Paassen P, van Rhenen A, Timmermans SAMEG, Ton E, Laar JMV, Spierings J.Rheumatology (Oxford). 2021 Sep 1;60(9):e326-e328. doi: 10.1093/rheumatology/keab239.PMID: 33711097
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  63. The clinical phenotype of systemic sclerosis patients with anti-PM/Scl antibodies: results from the EUSTAR cohort. Lazzaroni MG, Marasco E, Campochiaro C, DeVries-Bouwstra J, Gonzalez-Perez MI, Rojas-Serrano J, Hachulla E, Zanatta E, Barsotti S, Furini F, Triantafyllias K, Abignano G, Truchetet ME, De Luca G, De Langhe E, Hesselstrand R, Ingegnoli F, Bertoldo E, Smith V, Bellando-Randone S, Poormoghim H, Colombo E, Ceribelli A, Furloni A, Zingarelli S, Cavazzana I, Franceschini F, Del Galdo F, Denton CP, Cavagna L, Distler O, Allanore Y, Airò P; EUSTAR co-authors.Rheumatology (Oxford). 2021 Nov 3;60(11):5028-5041. doi: 10.1093/rheumatology/keab152.PMID: 33580257
  64. PASTUL questionnaire: a tool for self-assessment of scleroderma skin during the COVID-19 pandemic. Spierings J, Ong V, Denton CP.Ann Rheum Dis. 2021 Jun;80(6):819-820. doi: 10.1136/annrheumdis-2020-219775. Epub 2021 Jan 29.PMID: 33514506
  65. Photoacoustic and high-frequency ultrasound imaging of systemic sclerosis patients. Daoudi K, Kersten BE, van den Ende CHM, van den Hoogen FHJ, Vonk MC, de Korte CL.Arthritis Res Ther. 2021 Jan 12;23(1):22. doi: 10.1186/s13075-020-02400-y.PMID: 33436082 .
  66. Efficacy and safety of nintedanib in patients with systemic sclerosis-associated interstitial lung disease treated with mycophenolate: a subgroup analysis of the SENSCIS trial. Highland KB, Distler O, Kuwana M, Allanore Y, Assassi S, Azuma A, Bourdin A, Denton CP, Distler JHW, Hoffmann-Vold AM, Khanna D, Mayes MD, Raghu G, Vonk MC, Gahlemann M, Clerisme-Beaty E, Girard M, Stowasser S, Zoz D, Maher TM; SENSCIS trial investigators.Lancet Respir Med. 2021 Jan;9(1):96-106. doi: 10.1016/S2213-2600(20)30330-1.PMID: 33412120  Clinical Trial.
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  68. Health-related quality of life in patients with systemic sclerosis: evolution over time and main determinants. van Leeuwen NM, Ciaffi J, Liem SIE, Huizinga TWJ, de Vries-Bouwstra JK.Rheumatology (Oxford). 2021 Aug 2;60(8):3646-3655. doi: 10.1093/rheumatology/keaa827.PMID: 33401302 .
  69. Opening the black box of non-pharmacological care in systemic sclerosis: a cross-sectional online survey of Dutch health professionals. Stöcker JK, Vonk MC, van den Hoogen FHJ, Nijhuis-van der Sanden MWG, Spierings J, Staal JB, Satink T, van den Ende CHM; ARCH study group.Rheumatol Int. 2021 Jul;41(7):1299-1310. doi: 10.1007/s00296-020-04765-4. Epub 2020 Dec 23.PMID: 33355711 .
  70. Angiopoietin-2 Promotes Inflammatory Activation in Monocytes of Systemic Sclerosis Patients. Carvalheiro T, Lopes AP, van der Kroef M, Malvar-Fernandez B, Rafael-Vidal C, Hinrichs AC, Servaas NH, Bonte-Mineur F, Kok MR, Beretta L, Zimmermann M, Marut W, Pego-Reigosa JM, Radstake TRDJ, Garcia S.Int J Mol Sci. 2020 Dec 15;21(24):9544. doi: 10.3390/ijms21249544.PMID: 33333969 .
  71. Feasibility of online home spirometry in systemic sclerosis-associated interstitial lung disease: a pilot study. Moor CC, van Leuven SI, Wijsenbeek MS, Vonk MC.Rheumatology (Oxford). 2021 May 14;60(5):2467-2471. doi: 10.1093/rheumatology/keaa607.PMID: 33212511 .
  72. Economic Burden and Management of Systemic Sclerosis-Associated Interstitial Lung Disease in 8 European Countries: The BUILDup Delphi Consensus Study. Davidsen JR, Miedema J, Wuyts W, Kilpeläinen M, Papiris S, Manali E, Robalo Cordeiro C, Morais A, Pérez M, Asijee G, Cendoya D, Soulard S.Adv Ther. 2021 Jan;38(1):521-540. doi: 10.1007/s12325-020-01541-5. Epub 2020 Nov 6.PMID: 33156462 .
  73. Evolution of Systemic Sclerosis-Associated Interstitial Lung Disease One Year After Hematopoietic Stem Cell Transplantation or Cyclophosphamide. Ciaffi J, van Leeuwen NM, Boonstra M, Kroft LJM, Schouffoer AA, Ninaber MK, Huizinga TWJ, de Vries-Bouwstra JK.Arthritis Care Res (Hoboken). 2022 Mar;74(3):433-441. doi: 10.1002/acr.24451. Epub 2022 Jan 13.PMID: 32961038 .
  74. Association of Anti-Topoisomerase I Antibodies of the IgM Isotype With Disease Progression in Anti-Topoisomerase I-Positive Systemic Sclerosis. Boonstra M, Bakker JA, Grummels A, Ninaber MK, Ajmone Marsan N, Wortel CM, Huizinga TWJ, Jordan S, Hoffman-Vold AM, Distler O, Toes REM, Scherer HU, de Vries-Bouwstra JK.Arthritis Rheumatol. 2020 Nov;72(11):1897-1904. doi: 10.1002/art.41403. Epub 2020 Sep 29.PMID: 32840062 .
  75. Association Between Centromere- and Topoisomerase-specific Immune Responses and the Degree of Microangiopathy in Systemic Sclerosis. van Leeuwen NM, Wortel CM, Fehres CM, Bakker JA, Scherer HU, Toes REM, Huizinga TWJ, de Vries-Bouwstra JK.J Rheumatol. 2021 Mar;48(3):402-409. doi: 10.3899/jrheum.191331. Epub 2020 Jun 1.PMID: 32482649
  76. Predictive factors for treatment-related mortality and major adverse events after autologous haematopoietic stem cell transplantation for systemic sclerosis: results of a long-term follow-up multicentre study. van Bijnen S, de Vries-Bouwstra J, van den Ende CH, Boonstra M, Kroft L, Geurts B, Snoeren M, Schouffoer A, Spierings J, van Laar JM, Huizinga TW, Voskuyl A, Marijt E, van der Velden W, van den Hoogen FH, Vonk MC.Ann Rheum Dis. 2020 Aug;79(8):1084-1089. doi: 10.1136/annrheumdis-2020-217058. Epub 2020 May 14.PMID: 32409324
  77. Smoking and systemic sclerosis: influence on microangiopathy and expression of anti-topoisomerase I antibodies in a monocentric cohort. Ciaffi J, van Leeuwen NM, Huizinga TWJ, de Vries-Bouwstra JK.Clin Exp Rheumatol. 2020 May-Jun;38 Suppl 125(3):25-28. Epub 2020 Mar 25.PMID: 32242801
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  79. Illness perceptions, risk perceptions and worries in patients with early systemic sclerosis: A focus group study. van Leeuwen NM, Boonstra M, Huizinga TWJ, Kaptein AA, de Vries-Bouwstra JK.Musculoskeletal Care. 2020 Jun;18(2):177-186. doi: 10.1002/msc.1453. Epub 2020 Jan 26.PMID: 31984643 .
  80. Lung function is associated with minimal EQ-5D changes over time in patients with systemic sclerosis. Ciaffi J, van Leeuwen NM, Liem SIE, Ninaber MK, Huizinga TWJ, de Vries-Bouwstra JK.Clin Rheumatol. 2020 May;39(5):1543-1549. doi: 10.1007/s10067-020-04951-6. Epub 2020 Jan 24.PMID: 31980971
  81. Contribution of Sex and Autoantibodies to Microangiopathy Assessed by Nailfold Videocapillaroscopy in Systemic Sclerosis: A Systematic Review of the Literature. van Leeuwen NM, Ciaffi J, Schoones JW, Huizinga TWJ, de Vries-Bouwstra JK.Arthritis Care Res (Hoboken). 2021 May;73(5):722-731. doi: 10.1002/acr.24149. Epub 2021 Apr 3.PMID: 31962005 .
  82. Standardisation of nailfold capillaroscopy for the assessment of patients with Raynaud’s phenomenon and systemic sclerosis. Smith V, Herrick AL, Ingegnoli F, Damjanov N, De Angelis R, Denton CP, Distler O, Espejo K, Foeldvari I, Frech T, Garro B, Gutierrez M, Gyger G, Hachulla E, Hesselstrand R, Iagnocco A, Kayser C, Melsens K, Müller-Ladner U, Paolino S, Pizzorni C, Radic M, Riccieri V, Snow M, Stevens W, Sulli A, van Laar JM, Vonk MC, Vanhaecke A, Cutolo M; EULAR Study Group on Microcirculation in Rheumatic Diseases and the Scleroderma Clinical Trials Consortium Group on Capillaroscopy.Autoimmun Rev. 2020 Mar;19(3):102458. doi: 10.1016/j.autrev.2020.102458. Epub 2020 Jan 10.PMID: 31927087  Review.
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  84. GWAS for systemic sclerosis identifies multiple risk loci and highlights fibrotic and vasculopathy pathways. López-Isac E, Acosta-Herrera M, Kerick M, Assassi S, Satpathy AT, Granja J, Mumbach MR, Beretta L, Simeón CP, Carreira P, Ortego-Centeno N, Castellvi I, Bossini-Castillo L, Carmona FD, Orozco G, Hunzelmann N, Distler JHW, Franke A, Lunardi C, Moroncini G, Gabrielli A, de Vries-Bouwstra J, Wijmenga C, Koeleman BPC, Nordin A, Padyukov L, Hoffmann-Vold AM, Lie B; European Scleroderma Group†; Proudman S, Stevens W, Nikpour M; Australian Scleroderma Interest Group (ASIG); Vyse T, Herrick AL, Worthington J, Denton CP, Allanore Y, Brown MA, Radstake TRDJ, Fonseca C, Chang HY, Mayes MD, Martin J.Nat Commun. 2019 Oct 31;10(1):4955. doi: 10.1038/s41467-019-12760-y.PMID: 31672989 .
  85. Quality of life and strain among caregivers of patients with systemic sclerosis. Stoop DF, de Vries-Bouwstra JK, Vliet Vlieland TP.Disabil Rehabil. 2020 Jun;42(12):1783-1784. doi: 10.1080/09638288.2019.1674390. Epub 2019 Oct 21.PMID: 31633430
  86. Treatment with cyclophosphamide i.v. pulse therapy is an option for effective treatment of skin fibrosis in patients with early systemic sclerosis. Kersten BE, den Broeder N, van den Hoogen FHJ, Knaapen-Hans HAK, van den Ende CHM, Vonk MC.Rheumatology (Oxford). 2020 Jul 1;59(7):1550-1555. doi: 10.1093/rheumatology/kez487.PMID: 31628802 .
  87. Cumulative endogenous estrogen exposure is not associated with severity of peripheral microangiopathy in patients with systemic sclerosis. Ciaffi J, van Leeuwen NM, Huizinga TWJ, de Vries-Bouwstra JK.Clin Exp Rheumatol. 2019 Jul-Aug;37 Suppl 119(4):82-87. Epub 2019 Oct 3.PMID: 31587694 Free article
  88. How do patients with systemic sclerosis experience currently provided healthcare and how should we measure its quality? Spierings J, van den Ende CHM, Schriemer RM, Bernelot Moens HJ, van der Bijl EA, Bonte-Mineur F, de Buck MPD, de Kanter MAE, Knaapen-Hans HKA, van Laar JM, Mulder UDJ, Potjewijd J, de Pundert LAJ, Schoonbrood THM, Schouffoer AA, Stel AJ, Vercoutere W, Voskuyl AE, de Vries-Bouwstra JK, Vonk MC; ARCH Study Group.Rheumatology (Oxford). 2020 Jun 1;59(6):1226-1232. doi: 10.1093/rheumatology/kez417.PMID: 31539063 .
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