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3. A comprehensive framework for navigating patient care in systemic sclerosis: A global response to the need for improving the practice of diagnostic and preventive strategies in SSc.

Author

Saketkoo, Lesley, Frech, Tracy, Varjú, Cecília, Domsic, Robyn, Farrell, Jessica, Gordon, Jessica, Mihai, Carina, Sandorfi, Nora, Shapiro, Lee, Poole, Janet, Volkmann, Elizabeth, Lammi, Monika, McAnally, Kendra, Alexanderson, Helene, Pettersson, Henrik, Hant, Faye, Kuwana, Masataka, Shah, Ami, Smith, Vanessa, Hsu, Vivien, Kowal-Bielecka, Otylia, Assassi, Shervin, Cutolo, Maurizio, Kayser, Cristiane, Shanmugam, Victoria, Vonk, Madelon, Fligelstone, Kim, Baldwin, Nancy, Connolly, Kerri, Ronnow, Anneliese, Toth, Beata, Suave, Maureen, Farrington, Sue, Bernstein, Elana, Crofford, Leslie, Czirják, László, Jensen, Kelly, Hinchclif, Monique, Hudson, Marie, Lammi, Matthew, Mansour, Jennifer, Morgan, Nadia, Mendoza, Fabian, Nikpour, Mandana, Pauling, John, Riemekasten, Gabriela, Russell, Anne-Marie, Scholand, Mary, Seigart, Elise, Rodriguez-Reyna, Tatiana, Hummers, Laura, Walker, Ulrich, and Steen, Virginia

Subjects
Disability, Interstitial lung disease, Pulmonary fibrosis, Pulmonary hypertension, Quality of life, Renal crisis, Scleroderma, Symptom burden, Systemic sclerosis, Humans, Hypertension, Pulmonary, Lung, Lung Diseases, Interstitial, Patient Care, Scleroderma, Systemic
Abstract

Systemic sclerosis (SSc), the most lethal of rheumatologic conditions, is the cause of death in >50% of SSc cases, led by pulmonary fibrosis followed by pulmonary hypertension and then scleroderma renal crisis (SRC). Multiple other preventable and treatable SSc-related vascular, cardiac, gastrointestinal, nutritional and musculoskeletal complications can lead to disability and death. Vascular injury with subsequent inflammation transforming to irreversible fibrosis and permanent damage characterizes SSc. Organ involvement is often present early in the disease course of SSc, but requires careful history-taking and vigilance in screening to detect. Inflammation is potentially reversible provided that treatment intensity quells inflammation and other immune mechanisms. In any SSc phenotype, opportunities for early treatment are prone to be under-utilized, especially in slowly progressive phenotypes that, in contrast to severe progressive ILD, indolently accrue irreversible organ damage resulting in later-stage life-limiting complications such as pulmonary hypertension, cardiac involvement, and malnutrition. A single SSc patient visit often requires much more physician and staff time, organization, vigilance, and direct management for multiple organ systems compared to other rheumatic or pulmonary diseases. Efficiency and efficacy of comprehensive SSc care enlists trending of symptoms and bio-data. Financial sustainability of SSc care benefits from understanding insurance reimbursement and health system allocation policies for complex patients. Sharing care between recognised SSc centers and local cardiology/pulmonary/rheumatology/gastroenterology colleagues may prevent complications and poor outcomes, while providing support to local specialists. As scleroderma specialists, we offer a practical framework with tools to facilitate an optimal, comprehensive and sustainable approach to SSc care. Improved health outcomes in SSc relies upon recogntion, management and, to the extent possible, prevention of SSc and treatment-related complications.

Published
2021

4. Natural variability in the disease course of SSc-ILD: implications for treatment.

Author

Vonk, Madelon, Walker, Ulrich, Volkmann, Elizabeth, Kreuter, Michael, Johnson, Sindhu, and Allanore, Yannick

Subjects
Humans, Lung, Lung Diseases, Interstitial, Risk Factors, Scleroderma, Systemic, Vital Capacity
Abstract

Interstitial lung disease (ILD) affects approximately 50% of patients with systemic sclerosis (SSc) and is the leading cause of death in SSc. Our objective was to gain insight into the progression of SSc-associated ILD (SSc-ILD). Using data from longitudinal clinical trials and observational studies, we assessed definitions and patterns of progression, risk factors for progression, and implications for treatment. SSc-ILD progression was commonly defined as exceeding specific thresholds of lung function worsening and/or increasing radiographic involvement. One definition used in several studies is decline in forced vital capacity (FVC) of ≥10%, or ≥5-10% plus a decline in diffusing capacity of the lung for carbon monoxide ≥15%. Based on these criteria, 20-30% of patients in observational cohorts develop progressive ILD, starting early in the disease course and progressing at a highly variable rate.Risk factors such as age, FVC, extent of fibrosis and presence of anti-topoisomerase I antibodies can help predict progression of SSc-ILD, though composite risk scores may offer greater predictive power. Whilst the variability of the disease course in SSc-ILD makes risk stratification of patients challenging, the decision to initiate, change or stop treatment should be based on a combination of the current disease state and the speed of progression.

Published
2021

5. Does the Impact of COVID‐19 on Patients With Systemic Sclerosis Change Over Time?

Author

Deibel, Elisabeth, Carreira, Patricia E., Vonk, Madelon, del Papa, Nicoletta, Bečvář, Radim, Guillén‐Del‐Castillo, Alfredo, Campochiaro, Corrado, Poormoghim, Hadi, Liem, Sophie, Lazzaroni, Maria‐Grazia, Giollo, Alessandro, Mekinian, Arsène, de Vries‐Bouwstra, Jeska, De Santis, Maria, Balbir‐Gurman, Alexandra, Mihai, Carina, De Luca, Giacomo, Moiseev, Sergey, Zanatta, Elisabetta, Foti, Rosario, Rednic, Simona, Denton, Christopher, Cutolo, Maurizio, Belloli, Laura, Airo, Paolo, Garzanova, Liudmila, Moroncini, Gianluca, İnanç, Murat, Panopoulos, Stylianos, Tandaipan, Jose‐Luis, Chatelus, Emmanuel, Rosato, Edoardo, Kuwana, Masataka, Yavuz, Sule, Alegre‐Sancho, Juan J., Smith, Vanessa, Szűcs, Gabriella, Henes, Joerg, Rodríguez‐Pintó, Ignasi, Atzeni, Fabiola, Spierings, Julia, Truchetet, Marie‐Elise, Milchert, Marcin, Brito de Araujo, Daniel, Riemekasten, Gabriela, Bernardino, Vera, Martin, Thierry, del Galdo, Francesco, Vacca, Alessandra, Mendoza, Fabian, Midtvedt, Øyvind, Murdaca, Giuseppe, Santiago, Tânia, Codullo, Veronica, Cacciapaglia, Fabio, Walker, Ulrich, Brunborg, Cathrine, Tirelli, Francesca, Allanore, Yannick, Furst, Daniel E., Matucci, Marco, Gabrielli, Armando, Distler, Oliver, and Hoffmann‐Vold, Anna‐Maria

Published
2024
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6. Cohort Enrichment Strategies for Progressive Interstitial Lung Disease in Systemic Sclerosis From European Scleroderma Trials and Research

Author

Vacca, Alessandra, Giollo, Alessandro, Balbir-Gurman, Alexandra, Gheorghiu, Ana Maria, Marcoccia, Antonella, Herrick, Ariane, Radic, Mislav, Stamenkovic, Bojana, Anic, Branimir, Granel, Brigitte, Ribi, Camillo, Selmi, Carlo Francesco, Carlos de la Puente, Milano, de Souza Müller, Carolina, Denton, Christopher, Kayser, Cristiane, Tanaseanu, Cristina-Mihaela, Majewski, Dominik, Rimar, Doron, Krasowska, Dorota, Veale, Douglas, Walker, Ulrich, Kerzberg, Eduardo, Rezus, Elena, Zanatta, Elisabetta, Siegert, Elise, De Langhe, Ellen, Oksel, Fahrettin, Ingegnoli, Francesca, Cantatore, Francesco Paolo, Szücs, Gabriela, Cuomo, Giovanna, Seskute, Goda, Litinsky, VilniusIra, Castellví, Ivan, Morovic-Vergles, Jadranka, Sibilia, Jean, Henes, Jörg, Solanki, Kamal, Perdan-Pirkmajer, Katja, Herrmann, Kristine, Saketkoo, Lesley Ann, Stamp, Lisa, Mouthon, Luc, Salvador, Maria João, Pozzi, Maria Rosa, Üprus, Maria, Vanthuyne, Marie, Engelhart, Merete, Köhm, Michaela, Iudici, Michele, Inanc, Murat, Fathi, Nihal, Pamuk, Nuri, García de la Peña Lefebv, Paloma, Carreira, Patricia E., Bancel, Dominique Farge, Moroncini, Luca, Montecucco, C., Ancuta, Codrina, Sunderkötter, Cord, Müller-Ladner, Ulf, Rosato, Edoardo, Kucharz, Eugene J., Iannone, Florenzo, Del Galdo, Francesco, Poormoghim, Hadi, Kötter, Ina, Distler, Jörg, Cutolo, Maurizio, Tikly, Mohammed, Damjanov, Nemanja, Hunzelmann, Nicolas, Vlachoyiannopoulos, P., Hasler, Paul, Sarzi Puttini, Piercarlo, Wiland, Piotr, Becvar, Radim, Yavuz, Sule, Zdrojewski, Zbigniew, Pellerito, Raffaele, Foti, Rosario, Ionescu, Ruxandra Maria, Adler, Sabine, Kahl, Sarah, Moiseev, Sergey, Stebbings, Simon, Rednic, Simona, Negrini, Simone, Heitmann, Stefan, Ullman, Susanne, Agachi, Svetlana, Martin, Thierry, Schmeiser, Tim, Riccieri, Valeria, Smith, Vanessa, Bernardino, Vera, Ortiz-Santamaria, Vera, Hsu, Vivien M., Abdel Atty Mohamed, Walid Ahmed, Hoffmann-Vold, Anna-Maria, Brunborg, Cathrine, Airò, Paolo, Ananyeva, Lidia P., Czirják, László, Guiducci, Serena, Hachulla, Eric, Li, Mengtao, Mihai, Carina, Riemekasten, Gabriela, Sfikakis, Petros P., Valentini, Gabriele, Kowal-Bielecka, Otylia, Allanore, Yannick, and Distler, Oliver

Published
2023
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8. Stratification in systemic sclerosis according to autoantibody status versus skin involvement: a study of the prospective EUSTAR cohort

Author

Matucci Cerinic, Marco, Walker, Ulrich, Iannone, Florenzo, Jordan, Suzana, Becvar, Radim, Kowal Bielecka, Otylia, Cutolo, Maurizio, Cuomo, Giovanna, Kedor, Claudia, Rednic, Simona, Avouac, Jérome, Vlachoyiannopoulos, P., Montecucco, C., Stork, Jiri, Inanc, Murat, Carreira, Patricia E., Novak, Srdan, Czirják, László, Iudici, Michele, Kucharz, Eugene J., Zanatta, Elisabetta, Perdan-Pirkmajer, Katja, Coleiro, Bernard, Moroncini, Gianluca, Farge Bancel, Dominique, Airò, Paolo, Hesselstrand, Roger, Radic, Mislav, Braun-Moscovici, Yolanda, Lo Monaco, Andrea, Hunzelmann, Nicolas, Pellerito, Raffaele, Giollo, Alessandro, Morovic-Vergles, Jadranka, Denton, Christopher, Vonk, Madelon, Damjanov, Nemanja, Henes, Jörg, Ortiz Santamaria, Vera, Heitmann, Stefan, Krasowska, Dorota, Hasler, Paul, Kohm, Michaela, Foeldvari, Ivan, Bajocchi, Gianluigi, Salvador, Maria João, Stamenkovic, Bojana, Selmi, Carlo Francesco, Tikly, Mohammed, Ananieva, Lidia P., Herrick, Ariane, Müller-Ladner, Ulf, De Palma, Raffaele, Engelhart, Merete, Szücs, Gabriela, Sobrino Grande, Cristina, Midtvedt, Øyvind, Launay, David, Riccieri, Valeria, Ionescu, Ruxandra Maria, Sha, Ami, Gheorghiu, Ana Maria, Sunderkötter, Cord, Ingegnoli, Francesca, Mouthon, Luc, Smith, Vanessa, Cantatore, Francesco Paolo, Ullman, Susanne, Alberto von Mühlen, Carlos, Pozzi, Maria Rosa, Eyerich, Kilian, Wiland, Piotr, Vanthuyne, Marie, Alegre-Sancho, Juan Jose, Herrmann, Kristine, De Langhe, Ellen, Anic, Branimir, Üprus, Maria, Yavuz, Sule, Granel, Brigitte, de Souza Müller, Carolina, Busquets, Joanna, Agachi, Svetlana, Stebbings, Simon, Mathieu, D'Alessandro, Sampaio-Barros, Percival D., Stamp, Lisa, Solanki, Kamal, Veale, Douglas, Loyo, Esthela, Li, Mengtao, Abdel Atty Mohamed, Walid Ahmed, Gigante, Antonietta, Oksel, Fahrettin, Tanaseanu, Cristina-Mihaela, Foti, Rosario, Ancuta, Codrina, Maurer, Britta, van Laar, Jacob, Kayser, Cristiane, Fathi, Nihal, García de la Peña Lefebvre, Paloma, Sibilia, Jean, Litinsky, Ira, Abignano, Giuseppina, Seskute, Goda, Saketkoo, Lesley Ann, Kerzberg, Eduardo, Bianchi, Washington, Castellví, Ivan, Limonta, Massimiliano, Rimar, Doron, Couto, Maura, Spertini, François, Marcoccia, Antonella, Kahl, Sarah, Hsu, Ivien M., Martin, Thierry, Moiseev, Sergey, Chung, Lorinda S., Schmeiser, Tim, Majewski, Dominik, Zdrojewski, Zbigniew, Martínez-Barrio, Julia, Bernardino, Vera, Sommerlatte, Sabine, Levy, Yair, Rezus, Elena, Nuri Pamuk, Omer, Sarzi Puttini, Piercarlo, Poormoghim, Hadi, Kötter, Ina, Gaches, Francis, Belloli, Laura, Sfikakis, Petros, Markus, Juliana, Feldman, Gary R, Ramazan, Ana-Maria, Scherer, H.U., Truchetet, Marie-Elise, Lescoat, Alain, Dagna, Lorenzo, van Laar, J.M., Rudnicka, Lidia, Oliveira, Susana, Atzeni, Fabiola, Kuwana, Masataka, Mekinian, Arsene, Martin, Mickaël, Tanaka, Yoshiya, Elhai, Muriel, Sritharan, Nanthara, Boubaya, Marouane, Balbir-Gurman, Alexandra, Siegert, Elise, Hachulla, Eric, de Vries-Bouwstra, Jeska, Riemekasten, Gabriela, Distler, Jörg H W, Rosato, Edoardo, Del Galdo, Francesco, Mendoza, Fabian A, Furst, Daniel E, de la Puente, Carlos, Hoffmann-Vold, Anna-Maria, Gabrielli, Armando, Distler, Oliver, Bloch-Queyrat, Coralie, and Allanore, Yannick

Published
2022
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11. Does the impact of COVID-19 on patients with systemic sclerosis change over time?

Author

MS Reumatologie/Immunologie/Infectie, Infection & Immunity, Deibel, Elisabeth, Carreira, Patricia E, Vonk, Madelon, Del Papa, Nicoletta, Bečvář, Radim, Guillén-Del-Castillo, Alfredo, Campochiaro, Corrado, Poormoghim, Hadi, Liem, Sophie, Lazzaroni, Maria-Grazia, Giollo, Alessandro, Mekinian, Arsène, de Vries-Bouwstra, Jeska, De Santis, Maria, Balbir-Gurman, Alexandra, Mihai, Carina, De Luca, Giacomo, Moiseev, Sergey, Zanatta, Elisabetta, Foti, Rosario, Rednic, Simona, Denton, Christopher, Cutolo, Maurizio, Belloli, Laura, Airo, Paolo, Garzanova, Liudmila, Moroncini, Gianluca, İnanç, Murat, Panopoulos, Stylianos, Tandaipan, Jose-Luis, Chatelus, Emmanuel, Rosato, Edoardo, Kuwana, Masataka, Yavuz, Sule, Alegre-Sancho, Juan J, Smith, Vanessa, Szűcs, Gabriella, Henes, Joerg, Rodríguez-Pintó, Ignasi, Atzeni, Fabiola, Spierings, Julia, Truchetet, Marie-Elise, Milchert, Marcin, Brito de Araujo, Daniel, Riemekasten, Gabriela, Bernardino, Vera, Martin, Thierry, Del Galdo, Francesco, Vacca, Alessandra, Mendoza, Fabian, Midtvedt, Øyvind, Murdaca, Giuseppe, Santiago, Tânia, Codullo, Veronica, Cacciapaglia, Fabio, Walker, Ulrich, Brunborg, Cathrine, Tirelli, Francesca, Allanore, Yannick, Furst, Daniel E, Matucci, Marco, Gabrielli, Armando, Distler, Oliver, Hoffmann-Vold, Anna-Maria, MS Reumatologie/Immunologie/Infectie, Infection & Immunity, Deibel, Elisabeth, Carreira, Patricia E, Vonk, Madelon, Del Papa, Nicoletta, Bečvář, Radim, Guillén-Del-Castillo, Alfredo, Campochiaro, Corrado, Poormoghim, Hadi, Liem, Sophie, Lazzaroni, Maria-Grazia, Giollo, Alessandro, Mekinian, Arsène, de Vries-Bouwstra, Jeska, De Santis, Maria, Balbir-Gurman, Alexandra, Mihai, Carina, De Luca, Giacomo, Moiseev, Sergey, Zanatta, Elisabetta, Foti, Rosario, Rednic, Simona, Denton, Christopher, Cutolo, Maurizio, Belloli, Laura, Airo, Paolo, Garzanova, Liudmila, Moroncini, Gianluca, İnanç, Murat, Panopoulos, Stylianos, Tandaipan, Jose-Luis, Chatelus, Emmanuel, Rosato, Edoardo, Kuwana, Masataka, Yavuz, Sule, Alegre-Sancho, Juan J, Smith, Vanessa, Szűcs, Gabriella, Henes, Joerg, Rodríguez-Pintó, Ignasi, Atzeni, Fabiola, Spierings, Julia, Truchetet, Marie-Elise, Milchert, Marcin, Brito de Araujo, Daniel, Riemekasten, Gabriela, Bernardino, Vera, Martin, Thierry, Del Galdo, Francesco, Vacca, Alessandra, Mendoza, Fabian, Midtvedt, Øyvind, Murdaca, Giuseppe, Santiago, Tânia, Codullo, Veronica, Cacciapaglia, Fabio, Walker, Ulrich, Brunborg, Cathrine, Tirelli, Francesca, Allanore, Yannick, Furst, Daniel E, Matucci, Marco, Gabrielli, Armando, Distler, Oliver, and Hoffmann-Vold, Anna-Maria

Published
2024

12. Detection and Grading of Radiographic Hand Osteoarthritis Using an Automated Machine Learning Platform.

Author

Caratsch, Leo, Lechtenboehmer, Christian, Caorsi, Matteo, Oung, Karine, Zanchi, Fabio, Aleman, Yasser, Walker, Ulrich A., Omoumi, Patrick, and Hügle, Thomas

Subjects
OSTEOARTHRITIS diagnosis, HAND radiography, CRONBACH'S alpha, DESCRIPTIVE statistics, MATHEMATICAL models, AUTOMATION, MACHINE learning, THEORY, ALGORITHMS, SENSITIVITY & specificity (Statistics)
Abstract

Objective: Automated machine learning (autoML) platforms allow health care professionals to play an active role in the development of machine learning (ML) algorithms according to scientific or clinical needs. The aim of this study was to develop and evaluate such a model for automated detection and grading of distal hand osteoarthritis (OA). Methods: A total of 13,690 hand radiographs from 2,863 patients within the Swiss Cohort of Quality Management (SCQM) and an external control data set of 346 non‐SCQM patients were collected and scored for distal interphalangeal OA (DIP‐OA) using the modified Kellgren/Lawrence (K/L) score. Giotto (Learn to Forecast [L2F]) was used as an autoML platform for training two convolutional neural networks for DIP joint extraction and subsequent classification according to the K/L scores. A total of 48,892 DIP joints were extracted and then used to train the classification model. Heatmaps were generated independently of the platform. User experience of a web application as a provisional user interface was investigated by rheumatologists and radiologists. Results: The sensitivity and specificity of this model for detecting DIP‐OA were 79% and 86%, respectively. The accuracy for grading the correct K/L score was 75%, with a κ score of 0.76. The accuracy per DIP‐OA class differed, with 86% for no OA (defined as K/L scores 0 and 1), 71% for a K/L score of 2, 46% for a K/L score of 3, and 67% for a K/L score of 4. Similar values were obtained in an independent external test set. Qualitative and quantitative user experience testing of the web application revealed a moderate to high demand for automated DIP‐OA scoring among rheumatologists. Conversely, radiologists expressed a low demand, except for the use of heatmaps. Conclusion: AutoML platforms are an opportunity to develop clinical end‐to‐end ML algorithms. Here, automated radiographic DIP‐OA detection is both feasible and usable, whereas grading among individual K/L scores (eg, for clinical trials) remains challenging. [ABSTRACT FROM AUTHOR]

Published
2024
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13. Tocilizumab in systemic sclerosis: a randomised, double-blind, placebo-controlled, phase 3 trial

Author

Lucero, Eleonora, Pons-Estel, Bernardo, Rivero, Mariano, Tate, Guillermo, Smith, Vanessa, De Langhe, Ellen, Rashkov, Rasho, Batalov, Anastas, Goranov, Ivan, Stoilov, Rumen, Dunne, James, Johnson, Sindhu R., Pope, Janet E., Martinović Kaliterna, Dušanka, Mogensen, Mette, Olesen, Anne Braae, Allanore, Yannick, Henes, Joerg Christoph, Müller-Ladner, Ulf, Riemekasten, Gabriela, Skapenko, Alla, Vlachoyiannopoulos, Panayiotis, Kiss, Emese, Minier, Tünde, Beretta, Lorenzo, Gremese, Elisa, Matucci-Cerinic, Marco, Valentini, Gabriele, Asano, Yoshihide, Atsumi, Tatsuya, Ihn, Hironobu, Ishii, Tomonori, Ishikawa, Osamu, Kuwana, Masataka, Shima, Yoshihito, Takahashi, Hiroki, Takehara, Kazuhiko, Tanaka, Yoshiya, Yamasaki, Yoshioki, Bukauskiene, Loreta, Butrimiene, Irena, Medrano Ramirez, Gabriel, Ramos-Remus, Cesar, Sofia Rodriguez Reyna, Tatiana, de Vries-Bouwstra, Jeska, van Laar, Jacob M., Batko, Bogdan, Jeka, Slawomir, Kucharz, Eugeniusz, Majdan, Maria, Olesinska, Marzena, Smolenska, Zaneta, Alves, Jose, Santos, Maria, Mihai, Carmen Marina, Rednic, Simona, Castellvi Barranco, Ivan, Lopez Longo, Francisco Javier, Simeon Aznar, Carmen, Carreira, Patricia, Distler, Oliver, Walker, Ulrich A., Derrett-Smith, Emma, Griffiths, Bridget, McKay, Neil, Denton, Christopher P., Aelion, Jacob, Borofsky, Michael, Fleischmann, Roy, Forstot, Joseph Z., Furst, Daniel E., Kafaja, Suzanne, Khan, M. Faisal, Khanna, Dinesh, Kohen, Michael D., Martin, Richard W., Mendoza-Ballesteros, Fabian, Nami, Alireza, Pang, Shirley, Rios, Grissel, Simms, Robert, Sullivan, Keith Michael, Steen, Virginia D., Lin, Celia J F, Furst, Daniel E, Goldin, Jonathan, Kim, Grace, van Laar, Jacob M, Spotswood, Helen, Wagner, Bridget, Siegel, Jeffrey, Jahreis, Angelika, and Denton, Christopher P

Published
2020
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14. The identification and management of interstitial lung disease in systemic sclerosis: evidence-based European consensus statements

Author

Hoffmann-Vold, Anna-Maria, Maher, Toby M, Philpot, Edward E, Ashrafzadeh, Ali, Barake, Rafic, Barsotti, Simone, Bruni, Cosimo, Carducci, Paolo, Carreira, Patricia E, Castellví, Ivan, Del Galdo, Francesco, Distler, Jörg H W, Foeldvari, Ivan, Fraticelli, Paolo, George, Peter M, Griffiths, Bridget, Guillén-Del-Castillo, Alfredo, Hamid, Abdul Monem, Horváth, Rudolf, Hughes, Michael, Kreuter, Michael, Moazedi-Fuerst, Florentine, Olas, Jacek, Paul, Suman, Rotondo, Cinzia, Rubio-Rivas, Manuel, Seferian, Andrei, Tomčík, Michal, Uzunhan, Yurdagül, Walker, Ulrich A, Więsik-Szewczyk, Ewa, and Distler, Oliver

Published
2020
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15. The effect of hydroxychloroquine on activities of daily living and hand function in systemic sclerosis: results from an analysis of the EUSTAR cohort

Author

Bellando-Randone, Silvia, primary, Wilhalme, Holly, additional, Bruni, Cosimo, additional, Czirjak, Laszlo, additional, Distler, Oliver, additional, Allanore, Yannick, additional, Cuomo, Giovanna, additional, Denton, Christopher, additional, Galdo, Francesco Del, additional, Gheorghiu, Ana M., additional, RICCIERI, VALERIA, additional, Walker, Ulrich, additional, Truchet, Marie Elise, additional, Vonk, Madelon C., additional, Foeldvari, Ivan, additional, Cerinic, Marco Matucci, additional, and Furst, Daniel E., additional

Published
2024
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17. Twenty-two points to consider for clinical trials in systemic sclerosis, based on EULAR standards

Author

Khanna, Dinesh, Furst, Daniel E, Allanore, Yannick, Bae, Sangmee, Bodukam, Vijay, Clements, Philip J, Cutolo, Maurizio, Czirjak, Laszlo, Denton, Christopher P, Distler, Oliver, Walker, Ulrich A, Matucci-Cerinic, Marco, Müller-Ladner, Ulf, Seibold, James R, Singh, Manjit, and Tyndall, Alan

Subjects
Clinical Research, Clinical Trials and Supportive Activities, Rare Diseases, Scleroderma, Inflammatory and immune system, Clinical Trials as Topic, Delphi Technique, Europe, Evidence-Based Medicine, Humans, Outcome Assessment, Health Care, Patient Selection, Scleroderma, Systemic, Time Factors, systemic sclerosis, clinical trials, points to consider, Clinical Sciences, Immunology, Public Health and Health Services, Arthritis & Rheumatology
Abstract

ObjectiveSSc is clinically and aetiopathogenically heterogeneous. Consensus standards for more uniform trial design and selection of outcome measures are needed. The objective of this study was to develop evidence-based points to consider (PTCs) for future clinical trials in SSc.MethodsThirteen international SSc experts experienced in SSc clinical trial design were invited to participate. One researcher with experience in systematic literature review and three trainees were also included. A systematic review using PubMed and the Cochrane Central Register of Controlled Trials was conducted and PTCs when designing clinical trials in SSc were developed. As part of that development we conducted an Internet-based Delphi exercise regarding the main points to be made in the consensus statement. Consensus was defined as achieving a median score of ≥7 of 9.ResultsBy consensus, the experts decided to develop PTCs for each individual organ system. The current document provides a unifying outline on PTCs regarding general trial design, inclusion/exclusion criteria and analysis. Consensus was achieved regarding all the main points of the PTCs.ConclusionUsing European League Against Rheumatism suggestions for PTCs, a general outline for PTCs for controlled clinical trials in SSc was developed. Specific outlines for individual organ systems are to be published separately. This general outline should lead to more uniform and higher-quality trials and clearly delineate areas where further research is needed.

Published
2015

19. Phenotyping by persistent inflammation in systemic sclerosis associated interstitial lung disease: a EUSTAR database analysis

Author

Guler, Sabina, primary, Sarbu, Adela-Cristina, additional, Stalder, Odile, additional, Allanore, Yannick, additional, Bernardino, Vera, additional, Distler, Joerg, additional, Gabrielli, Armando, additional, Hoffmann-Vold, Anna-Maria, additional, Matucci-Cerinic, Marco, additional, Müller-Ladner, Ulf, additional, Ortiz-Santamaria, Vera, additional, Rednic, Simona, additional, Riccieri, Valeria, additional, Smith, Vanessa, additional, Ullman, Susanne, additional, Walker, Ulrich A, additional, Geiser, Thomas K, additional, Distler, Oliver, additional, Maurer, Britta, additional, and Kollert, Florian, additional

Published
2023
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20. Replik

Author

Pichler, Liliane, primary and Walker, Ulrich, additional

Published
2023
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21. Does the impact of COVID‐19 on patients with systemic sclerosis change over time?

Author

Deibel, Elisabeth, primary, Carreira, Patricia E., additional, Vonk, Madelon, additional, del Papa, Nicoletta, additional, Bečvář, Radim, additional, Guillén‐Del‐Castillo, Alfredo, additional, Campochiaro, Corrado, additional, Poormoghim, Hadi, additional, Liem, Sophie, additional, Lazzaroni, Maria‐Grazia, additional, Giollo, Alessandro, additional, Mekinian, Arsène, additional, de Vries‐Bouwstra, Jeska, additional, De Santis, Maria, additional, Balbir‐Gurman, Alexandra, additional, Mihai, Carina, additional, De Luca, Giacomo, additional, Moiseev, Sergey, additional, Zanatta, Elisabetta, additional, Foti, Rosario, additional, Rednic, Simona, additional, Denton, Christopher, additional, Cutolo, Maurizio, additional, Belloli, Laura, additional, Airo, Paolo, additional, Garzanova, Liudmila, additional, Moroncini, Gianluca, additional, İnanç, Murat, additional, Panopoulos, Stylianos, additional, Tandaipan, Jose‐Luis, additional, Chatelus, Emmanuel, additional, Rosato, Edoardo, additional, Kuwana, Masataka, additional, Yavuz, Sule, additional, Alegre‐Sancho, Juan J, additional, Smith, Vanessa, additional, Szűcs, Gabriella, additional, Henes, Joerg, additional, Rodríguez‐Pintó, Ignasi, additional, Atzeni, Fabiola, additional, Spierings, Julia, additional, Truchetet, Marie‐Elise, additional, Milchert, Marcin, additional, Brito de Araujo, Daniel, additional, Riemekasten, Gabriela, additional, Bernardino, Vera, additional, Martin, Thierry, additional, del Galdo, Francesco, additional, Vacca, Alessandra, additional, Mendoza, Fabian, additional, Midtvedt, Øyvind, additional, Murdaca, Giuseppe, additional, Santiago, Tânia, additional, Codullo, Veronica, additional, Cacciapaglia, Fabio, additional, Walker, Ulrich, additional, Brunborg, Cathrine, additional, Tirelli, Francesca, additional, Allanore, Yannick, additional, Furst, Daniel E., additional, Matucci, Marco, additional, Gabrielli, Armando, additional, Distler, Oliver, additional, and Hoffmann‐Vold, Anna‐Maria, additional

Published
2023
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23. Methodological challenges in monitoring new treatments for rare diseases: lessons from the cryopyrin-associated periodic syndrome registry

Author

Tilson, Hugh, Primatesta, Paola, Kim, Dennis, Rauer, Barbara, Hawkins, Philip N, Hoffman, Hal M, Kuemmerle-Deschner, Jasmin, van der Poll, Tom, and Walker, Ulrich A

Abstract

Abstract Background The Cryopyrin-Associated Periodic Syndromes (CAPS) are a group of rare hereditary autoinflammatory diseases and encompass Familial Cold Autoinflammatory Syndrome (FCAS), Muckle-Wells Syndrome (MWS), and Neonatal Onset Multisystem Inflammatory Disease (NOMID). Canakinumab is a monoclonal antibody directed against IL-1 beta and approved for CAPS patients but requires post-approval monitoring due to low and short exposures during the licensing process. Creative approaches to observational methodology are needed, harnessing novel registry strategies to ensure Health Care Provider reporting and patient monitoring. Methods A web-based registry was set up to collect information on long-term safety and effectiveness of canakinumab for CAPS. Results Starting in November 2009, this registry enrolled 241 patients in 43 centers and 13 countries by December 31, 2012. One-third of the enrolled population was aged

Published
2013

25. Systemic sclerosis and primary biliary cholangitis: Longitudinal data to determine the outcomes

Author

Lepri, Gemma, primary, Airò, Paolo, additional, Distler, Oliver, additional, Andréasson, Kristofer, additional, Braun-Moscovici, Yolanda, additional, Hachulla, Eric, additional, Balbir-Gurman, Alexandra, additional, De Langhe, Ellen, additional, Rednic, Simona, additional, Ingegnoli, Francesca, additional, Rosato, Edoardo, additional, Groseanu, Laura, additional, Ionescu, Ruxandra, additional, Bellando-Randone, Silvia, additional, Garzanova, Liudmila, additional, Beretta, Lorenzo, additional, Bellocchi, Chiara, additional, Moiseev, Sergey, additional, Novikov, Pavel, additional, Szabo, Iulia, additional, Krasowska, Dorota, additional, Codullo, Veronica, additional, Walker, Ulrich A., additional, Manolaraki, Chrysoula, additional, Guiducci, Serena, additional, Truchetet, Marie-Elise, additional, Iannone, Florenzo, additional, Tofani, Lorenzo, additional, Bruni, Cosimo, additional, Smith, Vanessa, additional, Cuomo, Giovanna, additional, Krusche, Martin, additional, Matucci-Cerinic, Marco, additional, and Allanore, Yannick, additional

Published
2023
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26. Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study

Author

Kocher, Agnes; https://orcid.org/0000-0002-8716-9727, Simon, Michael, Dwyer, Andrew A, Blatter, Catherine, Bogdanovic, Jasmina, Künzler-Heule, Patrizia, Villiger, Peter M, Dan, Diana, Distler, Oliver; https://orcid.org/0000-0002-0546-8310, Walker, Ulrich A; https://orcid.org/0000-0002-9183-550X, Nicca, Dunja; https://orcid.org/0000-0002-4133-8177, Kocher, Agnes; https://orcid.org/0000-0002-8716-9727, Simon, Michael, Dwyer, Andrew A, Blatter, Catherine, Bogdanovic, Jasmina, Künzler-Heule, Patrizia, Villiger, Peter M, Dan, Diana, Distler, Oliver; https://orcid.org/0000-0002-0546-8310, Walker, Ulrich A; https://orcid.org/0000-0002-9183-550X, and Nicca, Dunja; https://orcid.org/0000-0002-4133-8177

Abstract

BACKGROUND: The Chronic Care Model (CCM) is a longstanding and widely adopted model guiding chronic illness management. Little is known about how CCM elements are implemented in rare disease care or how patients' care experiences relate to health-related quality of life (HRQoL). We engaged patients living with systemic sclerosis (SSc) to assess current care according to the CCM from the patient perspective and their HRQoL. METHODS: We employed an explanatory sequential mixed methods design. First, we conducted a cross-sectional quantitative survey (n = 101) using the Patient Assessment of Chronic Illness Care (PACIC) and Systemic Sclerosis Quality of Life (SScQoL) questionnaires. Next, we used data from individual patient interviews (n = 4) and one patient focus group (n = 4) to further explore care experiences of people living with SSc with a focus on the PACIC dimensions. RESULTS: The mean overall PACIC score was 3.0/5.0 (95% CI 2.8-3.2, n = 100), indicating care was 'never' to 'generally not' aligned with the CCM. Lowest PACIC subscale scores related to 'goal setting/tailoring' (mean = 2.5, 95% CI 2.2-2.7) and 'problem solving/contextual counselling' (mean = 2.9, 95% CI 2.7-3.2). No significant correlations were identified between the mean PACIC and SScQoL scores. Interviews revealed patients frequently encounter major shortcomings in care including 'experiencing organized care with limited participation', 'not knowing which strategies are effective or harmful' and 'feeling left alone with disease and psychosocial consequences'. Patients often responded to challenges by 'dealing with the illness in tailored measure', 'taking over complex coordination of care' and 'relying on an accessible and trustworthy team'. CONCLUSIONS: The low PACIC mean overall score is comparable to findings in patients with common chronic diseases. Key elements of the CCM have yet to be systematically implemented in Swiss SSc management. Identified gaps in care related to lack of shared d

Published
2023

32. An international SUrvey on non-iNvaSive tecHniques to assess the mIcrocirculation in patients with RayNaud’s phEnomenon (SUNSHINE survey)

Author

Ingegnoli, Francesca, Ughi, Nicola, Dinsdale, Graham, Orenti, Annalisa, Boracchi, Patrizia, Allanore, Yannick, Foeldvari, Ivan, Sulli, Alberto, Cutolo, Maurizio, Smith, Vanessa, Herrick, Ariane L., Hij, Adrian, Sulli, Alberto, Nitsche, Alejandro, Vacca, Alessandra, Balbir-Gurman, Alexandra, Abdessemed, Amina, Vargas, Angelica, Valenzuela, Antonia, Makol, Ashima, Baranauskaite, Asta, Derfalvi, Beata, Serrano Benavente, Belén, Sozeri, Betul, Bica, Blanca E., Stamenkovic, Bojana, Mihai, Carina, Chizzolini, Carlo, Abud Mendoza, Carlos, de la Puente, Carlos, von Muhlen, Carlos, Bertolazzi, Chiara, Pain, Clare, Ickinger, Claudia, Ancuta, Codrina, Sunderkotter, Cord, Kayser, Cristiane, De Araujo, Daniel B., Launay, David, Khanna, Dinesh, Krasowska, Dorota, Veale, Douglas, Kaliterna, Dušanka M., Rosato, Edoardo, de Langhe, Ellen, Hachulla, Eric, Naredo, Esperanza, Loyo, Esthela, Alvarez Hernández, Everardo, Sztajnbok, Flavio, Boin, Francesco, Longo, Francisco J., van den Hoogen, Frank, Hernandez Molina, Gabriela, Riemekasten, Gabriela, Szucs, Gabriella, Moroncini, Gianluca, Fragoso Loyo, Hilda, Dobrev, Hristo, Janta, Iustina, Cracowski, Jean-Luc, Pauling, John, Akikusa, Jonathan, Sotoca Fernàndez, Jorge, Khan Ajaz, Kariem, Solanki, Kamal, Wierzba, Karol, Romanowska Próchnicka, Katarzyna, Rouster Stevens, Kelly, Belloli, Laura, Lewandowski, Laura, Santos, Lelita, Saketkoo, Lesley A., Ananyeva, Lidia, Beretta, Lorenzo, Michalska Jakubus, Małgorzata, Audisio, Marcelo J., Milchert, Marcin, Molina, Maria J., Moraes, Fontes Maria F., Terreri, Maria T., Puszczewicz, Mariusz, Barešić, Marko, Hufnagel, Markus, Mamani, Marta N., Gutierrez, Marwin, Curran, Megan, Hughes, Michael, Becker, Mike, Inanç, Murat, Petraitis, Mykolas, Juan Carlos, Nieto-Gonzàlez, Fathi, Nihal, Aktay Ayaz, Nuray, Distler, Oliver, Sander, Oliver, Ömer, Pamuk N., García dela Peña Lefebvre, Paloma, Caramaschi, Paola, Hasler, Paul, Ostojic, Predrag, Bečvář, Radim, Rodríguez, Reyna S. Tatiana, Lima, Rodrigo, Hesselstrand, Roger, Cimaz, Rolando, Irace, Rosaria, Petty, Ross, de Angelis, Rossella, Dobrota, Rucsandra, Payne-Poff, Sarah, Kubo, Satoshi, Guiducci, Serena, Popa, Serghei, Lambova, Sevdalina, Stebbings, Simon, Rednic, Simona, Yavuz, Sule, Benseler, Susa, Shevtsova, Tatzana, Daikeler, Thomas, Schmeiser, Tim, Frech, Tracy, Minier, Tünde, Müller Ladner, Ulf, Walker, Ulrich, Riccieri, Valeria, Vilela, Verônica, Hermann, Walter, Braun-Moscovici, Yolanda, Uziel, Yosef, Thierry, Zenone, and On behalf of the EULAR Study Group on Microcirculation in RheumaticDiseases

Published
2017
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33. The prevalence of anticitrullinated protein antibodies increases with age in healthy individuals at risk for rheumatoid arthritis

Author

Alpizar-Rodriguez, D, Brulhart, Laure, Mueller, Ruediger B., Möller, Burkhard, Dudler, Jean, Ciurea, Adrian, Walker, Ulrich A., Von Mühlenen, Ines, Kyburz, Diego, Zufferey, Pascal, Mahler, Michael, Bas, Sylvette, Gascon, Danielle, Lamacchia, Céline, Roux-Lombard, Pascale, Lauper, Kim, Nissen, Michael J., Courvoisier, Delphine S., Gabay, Cem, and Finckh, Axel

Published
2017
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34. Stratification in systemic sclerosis according to autoantibody status versus skin involvement: a study of the prospective EUSTAR cohort

Author

Elhai, Muriel, Sritharan, Nanthara, Boubaya, Marouane, Balbir-Gurman, Alexandra, Siegert, Elise, Hachulla, Eric, de Vries-Bouwstra, Jeska, Riemekasten, Gabriela, Distler, Jörg H W, Rosato, Edoardo, Del Galdo, Francesco, Mendoza, Fabian A, Furst, Daniel E, de la Puente, Carlos, Hoffmann-Vold, Anna-Maria, Gabrielli, Armando, Distler, Oliver, Bloch-Queyrat, Coralie, Allanore, Yannick, Matucci Cerinic, Marco, Walker, Ulrich, Iannone, Florenzo, Jordan, Suzana, Becvar, Radim, Kowal Bielecka, Otylia, Cutolo, Maurizio, Cuomo, Giovanna, Kedor, Claudia, Rednic, Simona, Avouac, Jérome, et al, University of Zurich, and Allanore, Yannick

Subjects
2403 Immunology, Rheumatology, 2745 Rheumatology, Immunology, 10051 Rheumatology Clinic and Institute of Physical Medicine, 2723 Immunology and Allergy, Immunology and Allergy, 610 Medicine & health
Published
2022

35. Patient preferences for the treatment of systemic sclerosis-associated interstitial lung disease: a discrete choice experiment

Author

Bruni, Cosimo, Heidenreich, Sebastian, Duenas, Ashley, Hoffmann-Vold, Anna-Maria, Gabrielli, Armando, Allanore, Yannick, Chatelus, Emmanuel, Distler, Jörg H W, Hachulla, Eric, Hsu, Vivien M, Hunzelmann, Nicolas, Khanna, Dinesh, Truchetet, Marie-Elise, Walker, Ulrich A, Alves, Margarida, Schoof, Nils, Saketkoo, Lesley Ann, Distler, Oliver, and University of Zurich

Subjects
Scleroderma, Systemic, Rheumatology, Surveys and Questionnaires, 10051 Rheumatology Clinic and Institute of Physical Medicine, Humans, Pharmacology (medical), Patient Preference, 610 Medicine & health, Lung Diseases, Interstitial, Choice Behavior
Abstract

Objectives Treatments for SSc-associated interstitial lung disease (SSc-ILD) differ in attributes, i.e. mode of administration, adverse events (AEs) and efficacy. As physicians and patients may perceive treatments differently, shared decision-making can be essential for optimal treatment provision. We therefore aimed to quantify patient preferences for different treatment attributes. Methods Seven SSc-ILD attributes were identified from mixed-methods research and clinician input: mode of administration, shortness of breath, skin tightness, cough, tiredness, risk of gastrointestinal AEs (GI-AEs) and risk of serious and non-serious infections. Patients with SSc-ILD completed an online discrete choice experiment (DCE) in which they were asked to repeatedly choose between two alternatives characterized by varying severity levels of the included attributes. The data were analysed using a multinomial logit model; relative attribute importance and maximum acceptable risk measures were calculated. Results Overall, 231 patients with SSc-ILD completed the DCE. Patients preferred twice-daily oral treatments and 6–12 monthly infusions. Patients’ choices were mostly influenced by the risk of GI-AEs or infections. Improvement was more important in respiratory symptoms than in skin tightness. Concerning trade-offs, patients accepted different levels of increase in GI-AE risk: +21% if it reduced the infusions’ frequency; +15% if changing to an oral treatment; up to +37% if it improved breathlessness; and up to +36% if it reduced the risk of infections. Conclusions This is the first study to quantitatively elicit patients’ preferences for treatment attributes in SSc-ILD. Patients showed willingness to make trade-offs, providing a firm basis for shared decision-making in clinical practice.

Published
2022

36. Stratification in systemic sclerosis according to autoantibody status versus skin involvement: a study of the prospective EUSTAR cohort

Author

Elhai, Muriel, primary, Sritharan, Nanthara, additional, Boubaya, Marouane, additional, Balbir-Gurman, Alexandra, additional, Siegert, Elise, additional, Hachulla, Eric, additional, de Vries-Bouwstra, Jeska, additional, Riemekasten, Gabriela, additional, Distler, Jörg H W, additional, Rosato, Edoardo, additional, Del Galdo, Francesco, additional, Mendoza, Fabian A, additional, Furst, Daniel E, additional, de la Puente, Carlos, additional, Hoffmann-Vold, Anna-Maria, additional, Gabrielli, Armando, additional, Distler, Oliver, additional, Bloch-Queyrat, Coralie, additional, Allanore, Yannick, additional, Matucci Cerinic, Marco, additional, Walker, Ulrich, additional, Iannone, Florenzo, additional, Jordan, Suzana, additional, Becvar, Radim, additional, Kowal Bielecka, Otylia, additional, Cutolo, Maurizio, additional, Cuomo, Giovanna, additional, Kedor, Claudia, additional, Rednic, Simona, additional, Avouac, Jérome, additional, Vlachoyiannopoulos, P., additional, Montecucco, C., additional, Stork, Jiri, additional, Inanc, Murat, additional, Carreira, Patricia E., additional, Novak, Srdan, additional, Czirják, László, additional, Iudici, Michele, additional, Kucharz, Eugene J., additional, Zanatta, Elisabetta, additional, Perdan-Pirkmajer, Katja, additional, Coleiro, Bernard, additional, Moroncini, Gianluca, additional, Farge Bancel, Dominique, additional, Airò, Paolo, additional, Hesselstrand, Roger, additional, Radic, Mislav, additional, Braun-Moscovici, Yolanda, additional, Lo Monaco, Andrea, additional, Hunzelmann, Nicolas, additional, Pellerito, Raffaele, additional, Giollo, Alessandro, additional, Morovic-Vergles, Jadranka, additional, Denton, Christopher, additional, Vonk, Madelon, additional, Damjanov, Nemanja, additional, Henes, Jörg, additional, Ortiz Santamaria, Vera, additional, Heitmann, Stefan, additional, Krasowska, Dorota, additional, Hasler, Paul, additional, Kohm, Michaela, additional, Foeldvari, Ivan, additional, Bajocchi, Gianluigi, additional, Salvador, Maria João, additional, Stamenkovic, Bojana, additional, Selmi, Carlo Francesco, additional, Tikly, Mohammed, additional, Ananieva, Lidia P., additional, Herrick, Ariane, additional, Müller-Ladner, Ulf, additional, De Palma, Raffaele, additional, Engelhart, Merete, additional, Szücs, Gabriela, additional, Sobrino Grande, Cristina, additional, Midtvedt, Øyvind, additional, Launay, David, additional, Riccieri, Valeria, additional, Ionescu, Ruxandra Maria, additional, Sha, Ami, additional, Gheorghiu, Ana Maria, additional, Sunderkötter, Cord, additional, Ingegnoli, Francesca, additional, Mouthon, Luc, additional, Smith, Vanessa, additional, Cantatore, Francesco Paolo, additional, Ullman, Susanne, additional, Alberto von Mühlen, Carlos, additional, Pozzi, Maria Rosa, additional, Eyerich, Kilian, additional, Wiland, Piotr, additional, Vanthuyne, Marie, additional, Alegre-Sancho, Juan Jose, additional, Herrmann, Kristine, additional, De Langhe, Ellen, additional, Anic, Branimir, additional, Üprus, Maria, additional, Yavuz, Sule, additional, Granel, Brigitte, additional, de Souza Müller, Carolina, additional, Busquets, Joanna, additional, Agachi, Svetlana, additional, Stebbings, Simon, additional, Mathieu, D'Alessandro, additional, Sampaio-Barros, Percival D., additional, Stamp, Lisa, additional, Solanki, Kamal, additional, Veale, Douglas, additional, Loyo, Esthela, additional, Li, Mengtao, additional, Abdel Atty Mohamed, Walid Ahmed, additional, Gigante, Antonietta, additional, Oksel, Fahrettin, additional, Tanaseanu, Cristina-Mihaela, additional, Foti, Rosario, additional, Ancuta, Codrina, additional, Maurer, Britta, additional, van Laar, Jacob, additional, Kayser, Cristiane, additional, Fathi, Nihal, additional, García de la Peña Lefebvre, Paloma, additional, Sibilia, Jean, additional, Litinsky, Ira, additional, Abignano, Giuseppina, additional, Seskute, Goda, additional, Saketkoo, Lesley Ann, additional, Kerzberg, Eduardo, additional, Bianchi, Washington, additional, Castellví, Ivan, additional, Limonta, Massimiliano, additional, Rimar, Doron, additional, Couto, Maura, additional, Spertini, François, additional, Marcoccia, Antonella, additional, Kahl, Sarah, additional, Hsu, Ivien M., additional, Martin, Thierry, additional, Moiseev, Sergey, additional, Chung, Lorinda S., additional, Schmeiser, Tim, additional, Majewski, Dominik, additional, Zdrojewski, Zbigniew, additional, Martínez-Barrio, Julia, additional, Bernardino, Vera, additional, Sommerlatte, Sabine, additional, Levy, Yair, additional, Rezus, Elena, additional, Nuri Pamuk, Omer, additional, Sarzi Puttini, Piercarlo, additional, Poormoghim, Hadi, additional, Kötter, Ina, additional, Gaches, Francis, additional, Belloli, Laura, additional, Sfikakis, Petros, additional, Markus, Juliana, additional, Feldman, Gary R, additional, Ramazan, Ana-Maria, additional, Scherer, H.U., additional, Truchetet, Marie-Elise, additional, Lescoat, Alain, additional, Dagna, Lorenzo, additional, van Laar, J.M., additional, Rudnicka, Lidia, additional, Oliveira, Susana, additional, Atzeni, Fabiola, additional, Kuwana, Masataka, additional, Mekinian, Arsene, additional, Martin, Mickaël, additional, and Tanaka, Yoshiya, additional

Published
2022
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37. Multicriteria decision analysis methods with 1000Minds for developing systemic sclerosis classification criteria

Author

Johnson, Sindhu R., Naden, Raymond P., Fransen, Jaap, van den Hoogen, Frank, Pope, Janet E., Baron, Murray, Tyndall, Alan, Matucci-Cerinic, Marco, Denton, Christopher P., Distler, Oliver, Gabrielli, Armando, van Laar, Jacob M., Mayes, Maureen, Steen, Virginia, Seibold, James R., Clements, Phillip, Medsger, Thomas A., Jr., Carreira, Patricia E., Riemekasten, Gabriela, Chung, Lorinda, Fessler, Barri J., Merkel, Peter A., Silver, Richard, Varga, John, Allanore, Yannick, Mueller-Ladner, Ulf, Vonk, Madelon C., Walker, Ulrich A., Cappelli, Susanna, and Khanna, Dinesh

Published
2014
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40. Long-term persistence of antibodies after diphtheria/tetanus vaccination in immunosuppressed patients with inflammatory rheumatic diseases and healthy controls

Author

Mischlinger, Johannes, primary, Jaeger, Veronika K., additional, Ciurea, Adrian, additional, Gabay, Cem, additional, Hasler, Paul, additional, Mueller, Ruediger B., additional, Siegrist, Claire Ann, additional, Villiger, Peter, additional, Walker, Ulrich A., additional, Hatz, Christoph, additional, and Bühler, Silja, additional

Published
2022
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41. Skeletal Muscle Disorders: A Noncardiac Source of Cardiac Troponin T

Author

du Fay de Lavallaz, Jeanne, primary, Prepoudis, Alexandra, additional, Wendebourg, Maria Janina, additional, Kesenheimer, Eva, additional, Kyburz, Diego, additional, Daikeler, Thomas, additional, Haaf, Philip, additional, Wanschitz, Julia, additional, Löscher, Wolfgang N., additional, Schreiner, Bettina, additional, Katan, Mira, additional, Jung, Hans H., additional, Maurer, Britta, additional, Hammerer-Lercher, Angelika, additional, Mayr, Agnes, additional, Gualandro, Danielle M., additional, Acket, Annemarie, additional, Puelacher, Christian, additional, Boeddinghaus, Jasper, additional, Nestelberger, Thomas, additional, Lopez-Ayala, Pedro, additional, Glarner, Noemi, additional, Shrestha, Samyut, additional, Manka, Robert, additional, Gawinecka, Joanna, additional, Piscuoglio, Salvatore, additional, Gallon, John, additional, Wiedemann, Sophia, additional, Sinnreich, Michael, additional, Mueller, Christian, additional, Zehntner, Tibor, additional, Giger, Raoul, additional, Stoll, Thomas, additional, Schöpfer, Hadrien, additional, Jordan, Fabian, additional, Carigiet, Michael, additional, Haeni, Nicola, additional, Gysin, Vincent, additional, Gafner, Michele Sara, additional, Wussler, Desiree, additional, Koechlin, Luca, additional, Freese, Michael, additional, Ruiz, Christian, additional, Strauch, Olivia, additional, Zimmermann, Tobias, additional, Strebel, Ivo, additional, Walker, Ulrich A., additional, Vogt, Thomas, additional, Hartmann, Martina, additional, Kahles, Timo, additional, Hasler, Paul, additional, Seidel, Funda, additional, Zavtsyea, Xenia, additional, Rentsch, Katharina, additional, Mitrovic, Sandra, additional, von Eckardstein, Arnold, additional, Mair, Johannes, additional, Schreinlechner, Michael, additional, Wallimann, Wijstke, additional, Dietrich, Manuel, additional, Roah, Tania Carrillo, additional, Knoll, Markus, additional, Fuchs, Alexander, additional, Bruske, Ellen, additional, Munz, Matthias, additional, Kunzelmann, Stefan, additional, Albert, Gesa, additional, Becher, Tobias, additional, Kastner, Peter, additional, and Shinjo, Samuel Katsuyuki, additional

Published
2022
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42. Prediction of improvement in skin fibrosis in diffuse cutaneous systemic sclerosis: a EUSTAR analysis

Author

Dobrota, Rucsandra, Maurer, Britta, Graf, Nicole, Jordan, Suzana, Mihai, Carina, Kowal-Bielecka, Otylia, Allanore, Yannick, Distler, Oliver, Cerinic, Marco Matucci, Guiducci, Serena, Walker, Ulrich, Lapadula, Giovanni, Iannone, Florenzo, Becvar, Radim, Sierakowsky, Stanislaw, Cutolo, Maurizio, Sulli, Alberto, Valentini, Gabriele, Cuomo, Giovanna, Vettori, Serena, Riemekasten, Gabriela, Siegert, Elise, Rednic, Simona, Nicoara, Ileana, Kahan, André, Vlachoyiannopoulos, P., Montecucco, C., Caporali, Roberto, Carreira, Patricia E., Novak, Srdan, Czirják, László, Varju, Cecilia, Chizzolini, Carlo, Kucharz, Eugene J., Kotulska, Anna, Kopec-Medrek, Magdalena, Widuchowska, Malgorzata, Cozzi, Franco, Rozman, Blaz, Mallia, Carmel, Coleiro, Bernard, Gabrielli, Armando, Farge, Dominique, Wu, Chen, Marjanovic, Zora, Faivre, Helene, Hij, Darin, Dhamadi, Roza, Airò, Paolo, Hesselstrand, Roger, Wollheim, Frank, Wuttge, Dirk M, Andréasson, Kristofer, Martinovic, Duska, Balbir-Gurman, Alexandra, Braun-Moscovici, Yolanda, Trotta, F., Lo Monaco, Andrea, Hunzelmann, Nicolas, Pellerito, Raffaele, Mauriziano, Ospedale, Bambara, Lisa Maria, Caramaschi, Paola, Black, Carol, Denton, Christopher, Damjanov, Nemanja, Henes, Jörg, Ortiz Santamaria, Vera, Heitmann, Stefan, Krasowska, Dorota, Seidel, Matthias, Burkhardt, Harald, Himsel, Andrea, Salvador, Maria J., Silva, José Antonio Pereira Da, Stamenkovic, Bojana, Stankovic, Aleksandra, Banja, Niska, Tikly, Mohammed, Ananieva, Lidia P., Denisov, Lev N., Müller-Ladner, Ulf, Frerix, Marc, Tarner, Ingo, Scorza, Raffaella, Clinica, U.O. Immunologia, Engelhart, Merete, Strauss, Gitte, Nielsen, Henrik, Damgaard, Kirsten, Mendoza, Antonio Zea, de la Puente, Carlos, Giraldo, Walter A. Sifuentes, Midtvedt, Øyvind, Reiseter, Silje, Hachulla, Eric, Launay, David, Valesini, Guido, Riccieri, Valeria, Ionescu, Ruxandra Maria, Opris, Daniela, Groseanu, Laura, Cornateanu, Roxana Sfrent, Ionitescu, Razvan, Gherghe, Ana Maria, Soare, Alina, Gorga, Marilena, Bojinca, Mihai, Schett, Georg, Distler, Jörg HW, Beyer, Christian, Meroni, Pierluigi, Ingegnoli, Francesca, Mouthon, Luc, De Keyser, Filip, Smith, Vanessa, Cantatore, Francesco P., Corrado, Ada, Pozzi, Maria R., Eyerich, Kilian, Hein, Rüdiger, Knott, Elisabeth, Wiland, Piotr, Szmyrka-Kaczmarek, Magdalena, Sokolik, Renata, Morgiel, Ewa, Madej, Marta, Krummel-Lorenz, Brigitte, Aringer, Martin, Günther, Claudia, Westhovens, Rene, de Langhe, Ellen, Lenaerts, Jan, Anic, Branimir, Baresic, Marko, Mayer, Miroslav, Radominski, Sebastião C., de Souza Müller, Carolina, Azevedo, Valderílio F., Agachi, Svetlana, Groppa, Liliana, Chiaburu, Lealea, Russu, Eugen, Popa, Sergei, Zenone, Thierry, Highton, John, Stamp, Lisa, Chapman, Peter, O’Donnell, John, Solanki, Kamal, Veale, Douglas, OʼRourke, Marie, Loyo, Esthela, Li, Mengtao, Rosato, Edoardo, Amoroso, Antonio, Tanaseanu, Cristina-Mihaela, Popescu, Monica, Dumitrascu, Alina, Tiglea, Isabela, Foti, Rosario, Chirieac, Rodica, Ancuta, Codrina, Villiger, Peter, Adler, Sabine, Sibilia, Jean, Chatelus, Emmanuel, Gottenberg, Jacques Eric, Chifflot, Hélène, Litinsky, Ira, Venalis, Algirdas, Butrimiene, Irena, Venalis, Paulius, Rugiene, Rita, Karpec, Diana, Saketkoo, Lesley Ann, Lasky, Joseph A., Kerzberg, Eduardo, Montoya, Fabiana, Cosentino, Vanesa, Limonta, Massimiliano, Brucato, Antonio Luca, Lupi, Elide, Spertini, François, Ribi, Camillo, Buss, Guillaume, Pasquali, Jean Louis, Martin, Thierry, and Gorse, Audrey

Published
2016
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43. Representativeness of Systemic Sclerosis Patients in Interventional Randomized Trials: an analysis of the EUSTAR database

Author

Iudici, Michele, Jarlborg, Matthias, Lauper, Kim; https://orcid.org/0000-0002-4315-9009, Müller-Ladner, Ulf, Smith, Vanessa; https://orcid.org/0000-0001-6271-7945, Allanore, Yannick; https://orcid.org/0000-0002-6149-0002, Balbir-Gurman, Alexandra, Doria, Andrea, Airò, Paolo, Walker, Ulrich A; https://orcid.org/0000-0002-9183-550X, Riccieri, Valeria, Vonk, Madelon C; https://orcid.org/0000-0002-2266-9907, Gabrielli, Armando, Hoffmann-Vold, Anna-Maria; https://orcid.org/0000-0001-6467-7422, Szücs, Gabriella, Martin, Thierry, Distler, Oliver; https://orcid.org/0000-0002-0546-8310, Courvoisier, Delphine S, EUSTAR collaborators, Iudici, Michele, Jarlborg, Matthias, Lauper, Kim; https://orcid.org/0000-0002-4315-9009, Müller-Ladner, Ulf, Smith, Vanessa; https://orcid.org/0000-0001-6271-7945, Allanore, Yannick; https://orcid.org/0000-0002-6149-0002, Balbir-Gurman, Alexandra, Doria, Andrea, Airò, Paolo, Walker, Ulrich A; https://orcid.org/0000-0002-9183-550X, Riccieri, Valeria, Vonk, Madelon C; https://orcid.org/0000-0002-2266-9907, Gabrielli, Armando, Hoffmann-Vold, Anna-Maria; https://orcid.org/0000-0001-6467-7422, Szücs, Gabriella, Martin, Thierry, Distler, Oliver; https://orcid.org/0000-0002-0546-8310, Courvoisier, Delphine S, and EUSTAR collaborators

Abstract

OBJECTIVE: To estimate the extent of and the reasons for ineligibility in randomized controlled trials (RCTs) of systemic sclerosis (SSc) patients included in the EUSTAR database, and to determine the association between patient's features and generalizability of study results. METHODS: We searched Clinicaltrials.gov for all records on interventional SSc-RCTs registered from January 2013 to January 2018. Two reviewers selected studies, and information on the main trial features were retrieved. Data from 8046 patients having a visit in the EUSTAR database since 2013 were used to check patient's eligibility. The proportion of potentially eligible patients per trial, and the risk factors for ineligibility were analyzed. Complete-, worst- and best-case analyses were performed. RESULTS: Of the 37 RCTs included, 43% were conducted in Europe, 35% were industry-funded, and 87% investigated pharmacological treatments. Ninety-one percent of 8046 patients included could have participated in at least one RCT. In complete-case analysis, the median [range] proportion of eligible patients having the main organ complication targeted by each study was 60% [10-100] in the overall sample of trials, ranging from 50% [32-79] for trials on skin fibrosis to 90% [34-77] for those targeting Raynaud's phenomenon. Among the criteria checked, treatment- and safety-related but not demographic were the main barriers to patient's recruitment. Older age, absence of Raynaud's phenomenon, and lower mRSS were independently associated with the failure to fulfill criteria for any of the included studies. CONCLUSIONS: Patient's representativeness in SSc-RCTs is highly variable and is driven more by treatment- and safety-related rather than demographic criteria.

Published
2022

44. Patient preferences for the treatment of systemic sclerosis-associated interstitial lung disease: a discrete choice experiment

Author

Bruni, Cosimo; https://orcid.org/0000-0003-2813-2083, Heidenreich, Sebastian; https://orcid.org/0000-0002-1909-5770, Duenas, Ashley, Hoffmann-Vold, Anna-Maria; https://orcid.org/0000-0001-6467-7422, Gabrielli, Armando, Allanore, Yannick; https://orcid.org/0000-0002-6149-0002, Chatelus, Emmanuel, Distler, Jörg H W; https://orcid.org/0000-0001-7408-9333, Hachulla, Eric; https://orcid.org/0000-0001-7432-847X, Hsu, Vivien M, Hunzelmann, Nicolas, Khanna, Dinesh; https://orcid.org/0000-0003-1412-4453, Truchetet, Marie-Elise, Walker, Ulrich A; https://orcid.org/0000-0002-9183-550X, Alves, Margarida, Schoof, Nils, Saketkoo, Lesley Ann, Distler, Oliver; https://orcid.org/0000-0002-0546-8310, Bruni, Cosimo; https://orcid.org/0000-0003-2813-2083, Heidenreich, Sebastian; https://orcid.org/0000-0002-1909-5770, Duenas, Ashley, Hoffmann-Vold, Anna-Maria; https://orcid.org/0000-0001-6467-7422, Gabrielli, Armando, Allanore, Yannick; https://orcid.org/0000-0002-6149-0002, Chatelus, Emmanuel, Distler, Jörg H W; https://orcid.org/0000-0001-7408-9333, Hachulla, Eric; https://orcid.org/0000-0001-7432-847X, Hsu, Vivien M, Hunzelmann, Nicolas, Khanna, Dinesh; https://orcid.org/0000-0003-1412-4453, Truchetet, Marie-Elise, Walker, Ulrich A; https://orcid.org/0000-0002-9183-550X, Alves, Margarida, Schoof, Nils, Saketkoo, Lesley Ann, and Distler, Oliver; https://orcid.org/0000-0002-0546-8310

Abstract

OBJECTIVES: Treatments for systemic sclerosis-associated interstitial lung disease (SSc-ILD) differ in attributes, i.e. mode of administration, adverse events (AEs) and efficacy. As physicians and patients may perceive treatments differently, shared decision-making can be essential for optimal treatment provision. We therefore aimed to quantify patient preferences for different treatment attributes. METHODS: Seven SSc-ILD attributes were identified from mixed-methods research and clinician input: mode of administration, shortness of breath, skin tightness, cough, tiredness, risk of gastrointestinal AEs (GI-AEs), and risk of serious and non-serious infections. Patients with SSc-ILD completed an online discrete choice experiment (DCE) in which they were asked to repeatedly choose between two alternatives characterized by varying severity levels of the included attributes. The data were analysed using a multinomial logit model; relative attribute importance and maximum acceptable risk measures were calculated. RESULTS: Overall, 231 patients with SSc-ILD completed the DCE. Patients preferred twice-daily oral treatments and 6-12-monthly infusions. Patients' choices were mostly influenced by the risk of GI-AEs or infections. Improvement was more important in respiratory symptoms than in skin tightness. Concerning trade-offs, patients accepted different levels of increase in GI-AE risk: +21% if it reduced the infusions' frequency; +15% if changing to an oral treatment; up to + 37% if it improved breathlessness; and up to + 36% if it reduced the risk of infections. CONCLUSIONS: This is the first study to quantitatively elicit patients' preferences for treatment attributes in SSc-ILD. Patients showed willingness to make trade-offs, providing a firm basis for shared decision-making in clinical practice.

Published
2022

45. Mapping and predicting mortality from systemic sclerosis

Author

Elhai, Muriel, Meune, Christophe, Boubaya, Marouane, Avouac, Jérôme, Hachulla, Eric, Balbir-Gurman, Alexandra, Riemekasten, Gabriela, Airò, Paolo, Joven, Beatriz, Vettori, Serena, Cozzi, Franco, Ullman, Susanne, Czirják, László, Tikly, Mohammed, Müller-Ladner, Ulf, Caramaschi, Paola, Distler, Oliver, Iannone, Florenzo, Ananieva, Lidia P, Hesselstrand, Roger, Becvar, Radim, Gabrielli, Armando, Damjanov, Nemanja, Salvador, Maria J, Riccieri, Valeria, Mihai, Carina, Szücs, Gabriella, Walker, Ulrich A, Hunzelmann, Nicolas, Martinovic, Duska, Smith, Vanessa, Müller, Carolina de Souza, Montecucco, Carlo Maurizio, Opris, Daniela, Ingegnoli, Francesca, Vlachoyiannopoulos, Panayiotis G, Stamenkovic, Bojana, Rosato, Edoardo, Heitmann, Stefan, Distler, Jörg H W, Zenone, Thierry, Seidel, Matthias, Vacca, Alessandra, Langhe, Ellen De, Novak, Srdan, Cutolo, Maurizio, Mouthon, Luc, Henes, Jörg, Chizzolini, Carlo, Mühlen, Carlos Alberto von, Solanki, Kamal, Rednic, Simona, Stamp, Lisa, Anic, Branimir, Santamaria, Vera Ortiz, Santis, Maria De, Yavuz, Sule, Sifuentes-Giraldo, Walter Alberto, Chatelus, Emmanuel, Stork, Jiri, Laar, Jacob van, Loyo, Esthela, García de la Peña Lefebvre, Paloma, Eyerich, Kilian, Cosentino, Vanesa, Alegre-Sancho, Juan Jose, Kowal-Bielecka, Otylia, Rey, Grégoire, Matucci-Cerinic, Marco, and Allanore, Yannick

Published
2017
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