Performance of the EULAR Systemic sclerosis Impact of Disease (ScleroID) questionnaire as a patient-reported outcome measure for patients with diffuse systemic sclerosis

Autor: Ulf Mueller-Ladner, Marco Matucci-Cerinic, Oliver Distler, Cosimo Bruni, Otylia Kowal-Bielecka, Kim Fligelstone, Roger Hesselstrand, László Czirják, Carina Mihai, Gunnel Sandqvist, Rucsandra Dobrota, Patricia E Carreira, Ana Maria Gherghe, Tore Kvien, Turid Heiberg, Alexandru Garaiman, Mike Oliver Becker, Annelise Roennow, Ann Tyrrell Kennedy, Chris Denton

Publikováno v: RMD Open, Vol 10, Iss 4 (2024)

Objective Systemic sclerosis Impact of Disease (ScleroID) is the first comprehensive patient-reported outcome measure (PROM) specifically developed for systemic sclerosis (SSc). We investigated the performance of ScleroID in patients with diffuse cut

Externí odkaz: https://doaj.org/article/7b4b4609e7d54da5a3ff297304e83bed

Collaboration between patient organisations and a clinical research sponsor in a rare disease condition: learnings from a community advisory board and best practice for future collaborations

Autor: Ilaria Galetti, Maureen Sauve, Catarina Leite, Joep Welling, Martina Gahlemann, Annelise Roennow, Robert J Riggs, Ann Tyrrell Kennedy, Edith Brown, Alex Gonzalez, Alexandra Paula Portales Guiraud, François Houÿez, Rob Camp, Annie Gilbert, Lizette Moros, Jose Luis Luna Flores, Friedrich Schmidt, Wiebke Sauter, Henrik Finnern

Publikováno v: BMJ Open, Vol 10, Iss 12 (2020)

Introduction Transparent collaborations between patient organisations (POs) and clinical research sponsors (CRS) can identify and address the unmet needs of patients and caregivers. These insights can improve clinical trial participant experience and

Externí odkaz: https://doaj.org/article/90c0fae509b94a35b5a69e0ab34db997

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Development and validation of a patient-reported outcome measure for systemic sclerosis: the EULAR Systemic Sclerosis Impact of Disease (ScleroID) questionnaire.

Autor: Becker MO; Department of Rheumatology, University Hospital of Zurich, Zurich, Switzerland., Dobrota R; Department of Rheumatology, University Hospital of Zurich, Zurich, Switzerland., Garaiman A; Department of Rheumatology, University Hospital of Zurich, Zurich, Switzerland., Debelak R; Department of Psychology, Psychological Methods, Evaluation and Statistics, University of Zurich, Zurich, Switzerland.; Department of Psychology, Psychological Methodology, University of Leipzig, Leipzig, Germany., Fligelstone K; Scleroderma and Raynaud's UK, London, UK., Tyrrell Kennedy A; Federation of the European Scleroderma Associations (FESCA) aisbl, Tournai, Belgium., Roennow A; Federation of European Scleroderma Associations (FESCA), Saint Maur, Belgium., Allanore Y; Department of Rheumatology A, Descartes University, APHP, Cochin Hospital, Paris, France., Carreira PE; Department of Rheumatology, Hospital Universitario 12 de Octubre, Madrid, Spain., Czirják L; Department of Rheumatology and Immunology, University of Pécs, Pécs, Hungary., Denton CP; Centre for Rheumatology, University College London, Royal Free Campus, London, UK., Hesselstrand R; Department of Rheumatology, Lund University, Lund, Sweden., Sandqvist G; Department of Rheumatology, Lund University, Lund, Sweden., Kowal-Bielecka O; Department of Rheumatology and Internal Medicine, Medical University of Bialystok, Bialystok, Poland., Bruni C; Department of Experimental and Clinical Medicine, Division of Rheumatology AOUC, University of Florence, Florence, Italy., Matucci-Cerinic M; Department of Experimental and Clinical Medicine, Division of Rheumatology AOUC, University of Florence, Florence, Italy.; IRCCS San Raffaele Hospital, Unit of Immunology, Rheumatology, Allergy and Rare diseases (UnIRAR), Milan, Italy., Mihai C; Department of Rheumatology, University Hospital of Zurich, Zurich, Switzerland.; Department of Internal Medicine and Rheumatology, Cantacuzino Hospital, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania., Gheorghiu AM; Department of Internal Medicine and Rheumatology, Cantacuzino Hospital, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania., Mueller-Ladner U; Department of Rheumatology and Clinical Immunology, Justus-Liebig University Giessen, Campus Kerckhoff, Bad Nauheim, Germany., Sexton J; Division of Rheumatology and Research, Diakonhjemmet Hospital, Oslo, Norway., Kvien TK; Division of Rheumatology and Research, Diakonhjemmet Hospital, Oslo, Norway., Heiberg T; Regional Research Support, Oslo University Hospital, Oslo, Norway., Distler O; Department of Rheumatology, University Hospital of Zurich, Zurich, Switzerland oliver.distler@usz.ch.

Publikováno v: Annals of the rheumatic diseases [Ann Rheum Dis] 2022 Apr; Vol. 81 (4), pp. 507-515. Date of Electronic Publication: 2021 Nov 25.

Progress and Priorities in Systemic Sclerosis: The Next 10 Years – Report from the World Scleroderma Foundation

Autor: Bashar Kahaleh, Ann Tyrrell Kennedy, Alan Tyndall, Marco Matucci-Cerinic, Stefano Bombardieri, James R. Seibold, Daniel E. Furst, Christopher P. Denton, Janet E. Pope, Oliver Distler, Dinesh Khanna, Robert Lafyatis

Publikováno v: Journal of Scleroderma and Related Disorders. 1:7-9

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::4fecd2ac8fd809abb13b0ed61fb0f9df
https://doi.org/10.5301/jsrd.5000195