Search Results - "Kennedy, Ann Tyrrell"

Development and validation of a patient-reported outcome measure for systemic sclerosis: the EULAR Systemic Sclerosis Impact of Disease (ScleroID) questionnaire by Becker, Mike O, Dobrota, Rucsandra, Garaiman, Alexandru, Debelak, Rudolf, Fligelstone, Kim, Tyrrell Kennedy, Ann, Roennow, Annelise, Allanore, Yannick, Carreira, Patricia E, Czirják, László, Denton, Christopher P, Hesselstrand, Roger, Sandqvist, Gunnel, Kowal-Bielecka, Otylia, Bruni, Cosimo, Matucci-Cerinic, Marco, Mihai, Carina, Gheorghiu, Ana Maria, Mueller-Ladner, Ulf, Sexton, Joseph, Kvien, Tore K, Heiberg, Turid, Distler, Oliver

“…Patient-reported outcome measures (PROMs) are important for clinical practice and research. Given the high unmet need, our aim was to develop a comprehensive…”
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Impaired quality of life in systemic sclerosis and patient perception of the disease: a large international survey by Frantz, C, Avouac, J, Distler, O, Amrouche, F, Godard, D, Kennedy, AT, Connolly, K, Varga, J, Matucci-Cerinic, M, Allanore, Y

“…Abstract Objectives The purpose of this study was to assess health-related quality of life (HRQoL) and disease perception in a large, international group of…”
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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 by Roennow, Annelise, Sauvé, Maureen, Welling, Joep, Riggs, Robert J, Kennedy, Ann Tyrrell, Galetti, Ilaria, Brown, Edith, Leite, Catarina, Gonzalez, Alex, Portales Guiraud, Alexandra Paula, Houÿez, François, Camp, Rob, Gilbert, Annie, Gahlemann, Martina, Moros, Lizette, Luna Flores, Jose Luis, Schmidt, Friedrich, Sauter, Wiebke, Finnern, Henrik

“…Introduction Transparent collaborations between patient organisations (POs) and clinical research sponsors (CRS) can identify and address the unmet needs of…”
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EUSTAR biobanking: recommendations for the collection, storage and distribution of biospecimens in scleroderma research by Beyer, Christian, Distler, Jörg H W, Allanore, Yannick, Aringer, Martin, Avouac, Jérôme, Czirják, László, Cutolo, Maurizio, Damjanov, Nemanja, Del Galdo, Francesco, Fligelstone, Kim, Guiducci, Serena, Kowal-Bielecka, Otylia, van Laar, Jacob M, Martucci-Cerinic, Marco, Müller-Ladner, Ulf, Riemekasten, Gabriela, Tarner, Ingo H, Tyndall, Alan, Kennedy, Ann Tyrrell, Valentini, Gabriele, Vettori, Serena, Walker, Ulrich A, Denton, Christopher, Distler, Oliver

“…The European League Against Rheumatism Scleroderma Trials and Research Group (EUSTAR) has established an online database with clinical data of currently more…”
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Content of non-pharmacological care for systemic sclerosis and educational needs of European health professionals: a EUSHNet survey by Willems, Linda M, Redmond, Anthony C, Stamm, Tanja A, Boström, Carina, Decuman, Saskia, Kennedy, Ann Tyrrell, Brozd, Jadranka, Roškar, Sanja, Smith, Vanessa, Vliet Vlieland, Theodora P M, van den Ende, Cornelia H M

“…To describe the non-pharmacological care in systemic sclerosis (SSc) provided by European health professionals (HPs) including referrals, treatment targets,…”
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