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2. Non-surgical local treatments of digital ulcers in systemic sclerosis: a systematic literature review

Author

Campochiaro, Corrado, Suliman, Yossra A, Hughes, Michael, Schoones, Jan W, Giuggioli, Dilia, Moinzadeh, Pia, Baron, Murray, Chung, Lorinda, Ross, Laura, Maltez, Nancy, Allanore, Yannick, Denton, Christopher P, Distler, Oliver, Frech, Tracy, Furst, Daniel E, Khanna, Dinesh, Krieg, Thomas, Kuwana, Masataka, Matucci-Cerinic, Marco, Pope, Janet, and Alunno, Alessia

Published
2023
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3. Surgical management of digital ulcers in systemic sclerosis: A systematic literature review

Author

Suliman, Yossra A, Campochiaro, Corrado, Hughes, Michael, Schoones, Jan W., Giuggioli, Dilia, Moinzadeh, Pia, Baron, Murray, Chung, Lorinda, Ross, Laura, Maltez, Nancy, Allanore, Yannick, Denton, Christopher P., Distler, Oliver, Frech, Tracy, Furst, Daniel E., Khanna, Dinesh, Krieg, Thomas, Kuwana, Masataka, Matucci-Cerinic, Marco, Pope, Janet, and Alunno, Alessia

Published
2023
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9. Development and Initial Validation of the Novel Scleroderma Clinical Trials Consortium Activity Index.

Author

Ross, Laura, Hansen, Dylan, Proudman, Susanna, Khanna, Dinesh, Herrick, Ariane L., Stevens, Wendy, Baron, Murray, Nikpour, Mandana, Assassi, Shervin, Bruni, Cosimo, Chatterjee, Soumya, Chung, Lorinda, Derk, Chris, Foeldvari, Ivan, Ferdowsi, Nava, Fernandez‐Codina, Andreu, Frech, Tracy, Gordon, Jessica, Hant, Faye, and Hudson, Marie

Subjects
CONSENSUS (Social sciences), MORTALITY, MULTITRAIT multimethod techniques, RESEARCH methodology evaluation, CLINICAL trials, RESEARCH evaluation, DESCRIPTIVE statistics, EXPERIMENTAL design, DISEASES, KAPLAN-Meier estimator, RESEARCH methodology, SYSTEMIC scleroderma, QUALITY of life, TEST validity, DELPHI method, SURVIVAL analysis (Biometry), DATA analysis software, PROPORTIONAL hazards models, REGRESSION analysis
Abstract

Objective: Accurate measurement of disease activity in systemic sclerosis (SSc) remains a significant clinical challenge. The Scleroderma Clinical Trials Consortium (SCTC) convened an Activity Index (AI) Working Group (WG) to develop a novel measure of disease activity (SCTC‐AI). Methods: Using consensus methodology, we developed a conceptual definition of disease activity. Literature review and expert consensus generated provisional SCTC‐AI items, which were reduced by Delphi survey. Provisional items were weighted against a combined endpoint of morbidity and mortality, using time‐dependent Cox proportional hazards regression analysis of the Australian Scleroderma Cohort Study (ASCS) (n = 1,254). External validation of the SCTC‐AI was performed using data collected from 1,103 Canadian Scleroderma Research Group Study participants. Results: Disease activity in SSc was defined using consensus methodology as "aspects of disease that are reversible, or can be arrested, with time and, or effective therapy." One‐hundred and forty‐one provisional SCTC‐AI items were generated and reduced using three rounds of Delphi survey and statistical reduction and weighting, against mortality and quality of life measures, yielding a final 24‐item index with a maximum possible score of 140. Survival analysis in an external cohort showed a graded relationship between disease activity scores and survival (P < 0.01). Conclusion: We present a novel instrument to quantify the burden of disease activity in SSc. We have employed a rigorous consensus‐based process in combination with data‐driven methods to develop an instrument that has face, content, and criterion validity. Further work is required to fully validate and confirm the construct and discriminative validity of the SCTC‐AI. [ABSTRACT FROM AUTHOR]

Published
2024
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14. The Accuracy of the Patient Health Questionnaire-9 Algorithm for Screening to Detect Major Depression : An Individual Participant Data Meta-Analysis

Author

He, Chen, Levis, Brooke, Riehm, Kira E., Saadat, Nazanin, Levis, Alexander W., Azar, Marleine, Rice, Danielle B., Krishnan, Ankur, Wu, Yin, Sun, Ying, Imran, Mahrukh, Boruff, Jill, Cuijpers, Pim, Gilbody, Simon, Ioannidis, John P.A., Kloda, Lorie A., McMillan, Dean, Patten, Scott B., Shrier, Ian, Ziegelstein, Roy C., Akena, Dickens H., Arroll, Bruce, Ayalon, Liat, Baradaran, Hamid R., Baron, Murray, Beraldi, Anna, Bombardier, Charles H., Butterworth, Peter, Carter, Gregory, Chagas, Marcos Hortes Nisihara, Chan, Juliana C.N., Cholera, Rushina, Clover, Kerrie, Conwell, Yeates, de Man-van Ginkel, Janneke M., Fann, Jesse R., Fischer, Felix H., Fung, Daniel, Gelaye, Bizu, Goodyear-Smith, Felicity, Greeno, Catherine G., Hall, Brian J., Harrison, Patricia A., Härter, Martin, Hegerl, Ulrich, Hides, Leanne, Hobfoll, Stevan E., Hudson, Marie, Hyphantis, Thomas N., Inagaki, Masatoshi, Ismail, Khalida, Jetté, Nathalie, Khamseh, Mohammad E., Kiely, Kim M., Kwan, Yunxin, Lamers, Femke, Liu, Shen-Ing, Lotrakul, Manote, Loureiro, Sonia R., Löwe, Bernd, Marsh, Laura, McGuire, Anthony, Mohd-Sidik, Sherina, Munhoz, Tiago N., Muramatsu, Kumiko, Osório, Flávia L., Patel, Vikram, Pence, Brian W., Persoons, Philippe, Picardi, Angelo, Reuter, Katrin, Rooney, Alasdair G., da Silva dos Santos, Iná S., Shaaban, Juwita, Sidebottom, Abbey, Simning, Adam, Stafford, Lesley, Sung, Sharon, Tan, Pei Lin Lynnette, Turner, Alyna, van Weert, Henk C.P.M., White, Jennifer, Whooley, Mary A., Winkley, Kirsty, Yamada, Mitsuhiko, Thombs, Brett D., and Benedetti, Andrea

Published
2020

15. Damage Trajectories in Systemic Sclerosis Using Group‐Based Trajectory Modeling

Author

Barbacki, Ariane, Baron, Murray, Wang, Mianbo, Zhang, Yuqing, Stevens, Wendy, Sahhar, Joanne, Proudman, Susanna, Nikpour, Mandana, Man, Ada, Baron, M., Hudson, M., Gyger, G., Hoa, S., Pope, J., Larché, M., Khalidi, N., Massetto, A., Sutton, E., Rodriguez‐Reyna, T. S., Maltez, N., Thorne, C., Fortin, P.R., Iki, A., Robinson, D., Jones, N., LeClercq, S., Docherty, P., Smith, D., Fritzler, M., Nikpour, Mandana, Proudman, Susanna, Stevens, Wendy, Sahhar, Joanne, Ferdowsi, Nava, Morrisroe, Kathleen, Ross, Laura, Ngian, Gene‐Siew, Walker, Jennifer, Roddy, Janet, Host, Lauren, and Major, Gabor

Published
2023
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18. Factors associated with fears due to COVID-19: A Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 cohort study

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Fligelstone, Kim, Gottesman, Karen, Leite, Catarina, Pérez, Elisabet, Baron, Murray, Malcarne, Vanessa, Mayes, Maureen D., Nielson, Warren R., Riggs, Robert, Assassi, Shervin, Ells, Carolyn, van den Ende, Cornelia, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Nguyen, Christelle, Pope, Janet, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Chaigne, Benjamin, Chung, Lorinda, Correia, Chase, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Hatron, Pierre-Yves, Herrick, Ariane L., Hoa, Sabrina, Jones, Niall, Fernandes, Artur Jose de B., Kafaja, Suzanne, Khalidi, Nader, Launay, David, Manning, Joanne, Marie, Isabelle, Martin, Maria, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Sobanski, Vincent, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Wilcox, Pearce, Ayala, Mara Cañedo, Carboni-Jiménez, Andrea, Gagarine, Maria, Nordlund, Julia, Østbø, Nora, Rice, Danielle B., Turner, Kimberly A., Culos-Reed, Nicole, Dyas, Laura, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bustamante, Laura, Duchek, Delaney, Ellis, Kelsey, Wu, Yin, Kwakkenbos, Linda, Henry, Richard S., Carrier, Marie-Eve, Harb, Sami, Bourgeault, Angelica, Tao, Lydia, Negeri, Zelalem, Patten, Scott, Bartlett, Susan J., Mouthon, Luc, Varga, John, Benedetti, Andrea, and Thombs, Brett D.

Published
2021
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19. Changes in mental health symptoms from pre-COVID-19 to COVID-19 among participants with systemic sclerosis from four countries: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Fligelstone, Kim, Gottesman, Karen, Leite, Catarina, Pérez, Elisabet, Baron, Murray, Malcarne, Vanessa, Mayes, Maureen D., Nielson, Warren R., Riggs, Robert, Assassi, Shervin, Ells, Carolyn, van den Ende, Cornelia, Frech, Tracy, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Nguyen, Christelle, Pope, Janet, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Chaigne, Benjamin, Chung, Lorinda, Correia, Chase, Denton, Christopher, Domsic, Robyn, Dunne, James V., Dunogue, Bertrand, Farge-Bancel, Dominique, Fortin, Paul R., Gordon, Jessica, Granel-Rey, Brigitte, Hatron, Pierre-Yves, Herrick, Ariane L., Hoa, Sabrina, Jones, Niall, Fernandes, Artur Jose de B., Kafaja, Suzanne, Khalidi, Nader, Launay, David, Manning, Joanne, Marie, Isabelle, Martin, Maria, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Sobanski, Vincent, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Wilcox, Pearce, Ayala, Mara Cañedo, Carboni-Jiménez, Andrea, Gagarine, Maria, Nordlund, Julia, Østbø, Nora, Rice, Danielle B., Turner, Kimberly A., Culos-Reed, Nicole, Dyas, Laura, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bustamante, Laura, Duchek, Delaney, Ellis, Kelsey, Thombs, Brett D., Kwakkenbos, Linda, Henry, Richard S., Carrier, Marie-Eve, Patten, Scott, Harb, Sami, Bourgeault, Angelica, Tao, Lydia, Bartlett, Susan J., Mouthon, Luc, Varga, John, and Benedetti, Andrea

Published
2020
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21. Protocol for a partially nested randomised controlled trial to evaluate the effectiveness of the scleroderma patient-centered intervention network COVID-19 home-isolation activities together (SPIN-CHAT) program to reduce anxiety among at-risk scleroderma patients

Author

Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Richard, Michelle, Sauvé, Maureen, Welling, Joep, Baron, Murray, Furst, Daniel E., Gottesman, Karen, Malcarne, Vanessa, Mayes, Maureen D., Mouthon, Luc, Nielson, Warren R., Riggs, Robert, Wigley, Fredrick, Assassi, Shervin, Boutron, Isabelle, Ells, Carolyn, van den Ende, Cornelia, Fligelstone, Kim, Frech, Tracy, Godard, Dominique, Harel, Daphna, Hinchcliff, Monique, Hudson, Marie, Johnson, Sindhu R., Larche, Maggie, Leite, Catarina, Nguyen, Christelle, Pope, Janet, Portales, Alexandra, Rannou, François, Reyna, Tatiana Sofia Rodriguez, Schouffoer, Anne A., Suarez-Almazor, Maria E., Agard, Christian, Albert, Alexandra, André, Marc, Arsenault, Guylaine, Benzidia, Ilham, Bernstein, Elana J., Berthier, Sabine, Bissonnette, Lyne, Boire, Gilles, Bruns, Alessandra, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Cohen, Pascal, Correia, Chase, Dagenais, Pierre, Denton, Christopher, Domsic, Robyn, Dubois, Sandrine, Dunne, James V., Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul R., Gill, Anna, Gordon, Jessica, Granel-Rey, Brigitte, Gyger, Genevieve, Hachulla, Eric, Hatron, Pierre-Yves, Herrick, Ariane L., Hij, Adrian, Hoa, Sabrina, Ikic, Alena, Jones, Niall, de B. Fernandes, Artur Jose, Kafaja, Suzanne, Khalidi, Nader, Lambert, Marc, Launay, David, Liang, Patrick, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Martin, Maria, Martin, Thierry, Masetto, Ariel, Maurier, François, Mekinian, Arsene, Melchor, Sheila, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodriguez, Esther, Roux, Sophie, Smets, Perrine, Smith, Doug, Sobanski, Vincent, Spiera, Robert, Steen, Virginia, Stevens, Wendy, Sutton, Evelyn, Terrier, Benjamin, Thorne, Carter, Varga, John, Wilcox, Pearce, Ayala, Mara Cañedo, Ostbo, Nora, Thombs, Brett D., Kwakkenbos, Linda, Carrier, Marie-Eve, Bourgeault, Angelica, Tao, Lydia, Harb, Sami, Gagarine, Maria, Rice, Danielle, Bustamante, Laura, Ellis, Kelsey, Duchek, Delaney, Wu, Yin, Bhandari, Parash Mani, Neupane, Dipika, Carboni-Jiménez, Andrea, Henry, Richard S., Krishnan, Ankur, Sun, Ying, Levis, Brooke, He, Chen, Turner, Kimberly A., Benedetti, Andrea, Culos-Reed, Nicole, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Bartlett, Susan J., Dyas, Laura, and Patten, Scott

Published
2020
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23. The American College of Rheumatology Provisional Composite Response Index for Clinical Trials in Early Diffuse Cutaneous Systemic Sclerosis

Author

Khanna, Dinesh, Berrocal, Veronica J, Giannini, Edward H, Seibold, James R, Merkel, Peter A, Mayes, Maureen D, Baron, Murray, Clements, Philip J, Steen, Virginia, Assassi, Shervin, Schiopu, Elena, Phillips, Kristine, Simms, Robert W, Allanore, Yannick, Denton, Christopher P, Distler, Oliver, Johnson, Sindhu R, Matucci-Cerinic, Marco, Pope, Janet E, Proudman, Susanna M, Siegel, Jeffrey, Wong, Weng Kee, Wells, Athol U, and Furst, Daniel E

Subjects
Biomedical and Clinical Sciences, Clinical Sciences, Clinical Research, Scleroderma, Inflammatory and immune system, Adult, Female, Humans, Male, Middle Aged, Psychometrics, Randomized Controlled Trials as Topic, Rheumatology, Scleroderma, Diffuse, Severity of Illness Index, Public Health and Health Services, Psychology, Clinical sciences, Allied health and rehabilitation science
Abstract

ObjectiveEarly diffuse cutaneous systemic sclerosis (dcSSc) is characterized by rapid changes in the skin and internal organs. The objective of this study was to develop a composite response index in dcSSc (CRISS) for use in randomized controlled trials (RCTs).MethodsWe developed 150 paper patient profiles with standardized clinical outcome elements (core set items) using patients with dcSSc. Forty scleroderma experts rated 20 patient profiles each and assessed whether each patient had improved or not improved over a period of 1 year. Using the profiles for which raters had reached a consensus on whether the patients were improved versus not improved (79% of the profiles examined), we fit logistic regression models in which the binary outcome referred to whether the patient was improved or not, and the changes in the core set items from baseline to followup were entered as covariates. We tested the final index in a previously completed RCT.ResultsSixteen of 31 core items were included in the patient profiles after a consensus meeting and review of test characteristics of patient-level data. In the logistic regression model in which the included core set items were change over 1 year in the modified Rodnan skin thickness score, the forced vital capacity, the patient and physician global assessments, and the Health Assessment Questionnaire disability index, sensitivity was 0.982 (95% confidence interval 0.982-0.983) and specificity was 0.931 (95% confidence interval 0.930-0.932), and the model with these 5 items had the highest face validity. Subjects with a significant worsening of renal or cardiopulmonary involvement were classified as not improved, regardless of improvements in other core items. With use of the index, the effect of methotrexate could be differentiated from the effect of placebo in a 1-year RCT (P = 0.02).ConclusionWe have developed a CRISS that is appropriate for use as an outcome assessment in RCTs of early dcSSc.

Published
2016

26. Bicaudal D2 is a novel autoantibody target in systemic sclerosis that shares a key epitope with CENP-A but has a distinct clinical phenotype

Author

Pope, J., Baron, M., Markland, J., Robinson, D., Jones, N., Khalidi, N., Docherty, P., Kaminska, E., Masetto, A., Sutton, E., Mathieu, J.-P., Hudson, M., Ligier, S., Grodzicky, T., LeClercq, S., Thorne, C., Gyger, G., Smith, D., Fortin, P.R., Larché, M., Abu-Hakima, M., Rodriguez-Reyna, T.S., Cabral, A.R., Fritzler, M.J., Fritzler, Marvin J., Hudson, Marie, Choi, May Y., Mahler, Michael, Wang, Mianbo, Bentow, Chelsea, Milo, Jay, and Baron, Murray

Published
2018
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27. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context.

Author

Kwakkenbos, Linda, Jewett, Lisa R, Baron, Murray, Bartlett, Susan J, Furst, Dan, Gottesman, Karen, Khanna, Dinesh, Malcarne, Vanessa L, Mayes, Maureen D, Mouthon, Luc, Poiraudeau, Serge, Sauve, Maureen, Nielson, Warren R, Poole, Janet L, Assassi, Shervin, Boutron, Isabelle, Ells, Carolyn, van den Ende, Cornelia Hm, Hudson, Marie, Impens, Ann, Körner, Annett, Leite, Catarina, Costa Maia, Angela, Mendelson, Cindy, Pope, Janet, Steele, Russell J, Suarez-Almazor, Maria E, Ahmed, Sara, Coronado-Montoya, Stephanie, Delisle, Vanessa C, Gholizadeh, Shadi, Jang, Yeona, Levis, Brooke, Milette, Katherine, Mills, Sarah D, Razykov, Ilya, Fox, Rina S, and Thombs, Brett D

Subjects
Mental Health, Rehabilitation Medicine, Rheumatology, Statistics & Research Methods, Clinical Sciences, Public Health and Health Services, Other Medical and Health Sciences
Abstract

IntroductionPsychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN.Methods and analysisSPIN will employ the cohort multiple randomised controlled trial (cmRCT) design, in which patients consent to participate in a cohort for ongoing data collection. The aim is to recruit 1500-2000 patients from centres across the world within a period of 5 years (2013-2018). Eligible participants are persons ≥18 years of age with a diagnosis of SSc. In addition to baseline medical data, participants will complete patient-reported outcome measures every 3 months. Upon enrolment in the cohort, patients will consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other cohort participants. Once interventions are developed, patients from the cohort will be randomly selected and offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared with outcomes from trial-eligible patients who are not offered the interventions.Ethics and disseminationThe use of the cmRCT design, the development of self-guided online interventions and partnerships with patient organisations will allow SPIN to develop, rigourously test and effectively disseminate psychosocial and rehabilitation interventions for people with SSc.

Published
2013

29. Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort

Author

Baron, Murray, Bartlett, Susan J., Furst, Dan, Gottesman, Karen, van den Hoogen, Frank, Mouthon, Luc, Nielson, Warren R., Poiraudeau, Serge, Riggs, Robert, Sauve, Maureen, Wigley, Fredrick, Boutron, Isabelle, Costa Maia, Angela, El-Baalbaki, Ghassan, Ells, Carolyn, van den Ende, Cornelia, Fligelstone, Kim, Fortune, Catherine, Frech, Tracy, Godard, Dominique, Harel, Daphna, Hudson, Marie, Impens, Ann, Jang, Yeona, Johnson, Sindhu R., Kennedy, Ann Tyrell, Khanna, Dinesh, Larche, Maggie, Leite, Catarina, Marra, Carlo, Nielsen, Karen, Poole, Janet L., Pope, Janet, Rodriguez Reyna, Tatiana Sofia, Schouffoer, Anne A., Steele, Russell J., Suarez-Almazor, Maria E., Welling, Joep, Wong-Rieger, Durhane, Albert, Alexandra, Arsenault, Guylaine, Bissonnette, Lyne, Boire, Gilles, Bruns, Alessandra, Carreira, Patricia, Chung, Lorinda, Dagenais, Pierre, Denton, Christopher, Domsic, Robyn, Dunne, James V., Fortin, Paul, Gill, Anna, Gordon, Jessica, Gyger, Genevieve, Herrick, Ariane L., Hinchcliff, Monique, Ikic, Alena, Jones, Niall, de B. Fernandes, Artur Jose, Kafaja, Suzanne, Khalidi, Nader, Korman, Benjamin, Liang, Patrick, Manning, Joanne, Masetto, Ariel, Robinson, David, Roux, Sophie, Schiopu, Elena, Smith, Doug, Spiera, Robert, Steen, Virginia, Sutton, Evelyn, Thorne, Carter, Varga, John, Wilcox, Pearce, Delisle, Vanessa C., Fedoruk, Claire, Levis, Brooke, Pepin, Mia R., Persmann, Jennifer, Jewett, Lisa R., Kwakkenbos, Linda, Carrier, Marie-Eve, Malcarne, Vanessa L., Harcourt, Diana, Rumsey, Nichola, Mayes, Maureen D., Assassi, Shervin, Körner, Annett, Fox, Rina S., Gholizadeh, Shadi, Mills, Sarah D., Portales, Alexandra, and Thombs, Brett D.

Published
2017
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31. Organic solvent exposure and systemic sclerosis: A retrospective cohort study based on the Canadian Scleroderma Research Group registry

Author

Baron, M., Hudson, M., Gyger, G., Pope, J., Larche, M., Khalidi, N., Masetto, A., Sutton, E., Rodriguez Reyna, T.S., Maltez, N., Thorne, C., Fortin, P.R., Ikic, A., Robinson, D., Jones, N., LeClercq, S., Docherty, P., Smith, D., Fritzler, M.J., Kaminska, E., Muntyanu, Anastasiya, Milan, Raymond, Rahme, Elham, Baron, Murray, and Netchiporouk, Elena

Published
2024
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32. Organic Solvent Exposure and Systemic Sclerosis: A Retrospective Cohort Study Based on the Canadian Scleroderma Research Group Registry

Author

Muntyanu, Anastasiya, primary, Milan, Raymond, additional, Rahme, Elham, additional, Baron, Murray, additional, Netchiporouk, Elena, additional, Baron, M., additional, Hudson, M., additional, Gyger, G., additional, Pope, J., additional, Larche, M., additional, Khalidi, N., additional, Masetto, A., additional, Sutton, E., additional, Reyna, T.S. Rodriguez, additional, Maltez, N., additional, Thorne, C., additional, Fortin, P.R., additional, Ikic, A., additional, Robinson, D., additional, Jones, N., additional, LeClercq, S., additional, Docherty, P., additional, Smith, D., additional, and Fritzler, M.J., additional

Published
2023
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35. Setting the international standard for longitudinal follow-up of patients with systemic sclerosis: a Delphi-based expert consensus on core clinical features

Author

Yannick Allanore, Dinesh Khanna, Oliver Distler, Anna-Maria Hoffmann-Vold, Baron Murray, and Otylia Kowal-Bielecka

Subjects
Medicine
Abstract

Background Systemic sclerosis (SSc) is a severe, progressive multiorgan disease but to date, there are no established standardised international guidelines for follow-up of patients with SSc. The goal of this project was to develop an expert consensus for annual systematic investigations in patients with SSc to enhance their standard-of-care.Material and methods The Delphi method was applied. All SSc experts from the European Scleroderma Trials and Research group network and the Scleroderma Clinical Trial Consortium were invited to participate. All experts were asked to answer questionnaires in five Delphi steps to determine the domains of interest and tools for each domain for an annual systematic assessment of patients with SSc. Each item was rated on a scale between 0% and 100% (not and very important), and parameters rated >80% by more than 75% of the experts were regarded as acceptable.Results In total, 157 experts worldwide participated with 71.3% experts seeing >50 patients with SSc annually. In the first round, 23 domains and 204 tools were suggested. After five Delphi steps, experts agreed on 10 domains including (1) Raynaud’s phenomenon; (2) Digital ulcers; (3) Skin and mucosa; (4) Lung; (5); Heart; (6) GI domain, (7) Renal; (8) Musculoskeletal; (9) Laboratory and (10) Treatment. Overall, 55 tools were identified including clinical assessments, laboratory measurements and imaging or functional investigations.Conclusion Through five Delphi steps with world leading experts, a consensus was established on strongly suggested tools for a minimum annual systemic assessment of organ involvement in SSc. This work should enhance the standardisation and homogenisation of the practices.

Published
2019
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37. Safety and efficacy of subcutaneous tocilizumab in adults with systemic sclerosis (faSScinate): a phase 2, randomised, controlled trial

Author

Khanna, Dinesh, Denton, Christopher P, Jahreis, Angelika, van Laar, Jacob M, Frech, Tracy M, Anderson, Marina E, Baron, Murray, Chung, Lorinda, Fierlbeck, Gerhard, Lakshminarayanan, Santhanam, Allanore, Yannick, Pope, Janet E, Riemekasten, Gabriela, Steen, Virginia, Müller-Ladner, Ulf, Lafyatis, Robert, Stifano, Giuseppina, Spotswood, Helen, Chen-Harris, Haiyin, Dziadek, Sebastian, Morimoto, Alyssa, Sornasse, Thierry, Siegel, Jeffrey, and Furst, Daniel E

Published
2016
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38. Systemic pharmacological treatment of digital ulcers in systemic sclerosis: a systematic literature review

Author

Ross, Laura, Maltez, Nancy, Hughes, Michael, Schoones, Jan W, Baron, Murray, Chung, Lorinda, Giuggioli, Dilia, Moinzadeh, Pia, Suliman, Yossra A, Campochiaro, Corrado, Allanore, Yannick, Denton, Christopher P, Distler, Oliver, Frech, Tracy, Furst, Daniel E, Khanna, Dinesh, Krieg, Thomas, Kuwana, Masataka, Matucci-Cerinic, Marco, Pope, Janet, Alunno, Alessia, and University of Zurich

Subjects
10051 Rheumatology Clinic and Institute of Physical Medicine, 610 Medicine & health
Published
2023

41. Antinuclear antibody-negative systemic sclerosis

Author

Salazar, Gloria A., Assassi, Shervin, Wigley, Fredrick, Hummers, Laura, Varga, John, Hinchcliff, Monique, Khanna, Dinesh, Schiopu, Elena, Phillips, Kristine, Furst, Daniel E., Steen, Virginia, Baron, Murray, Hudson, Marie, Taillefer, Suzanne S., Pope, Janet, Jones, Niall, Docherty, Peter, Khalidi, Nader A., Robinson, David, Simms, Robert W., Silver, Richard M., Frech, Tracy M., Fessler, Barri J., Molitor, Jerry A., Fritzler, Marvin J., Segal, Barbara M., Al-Kassab, Firas, Perry, Marilyn, Yang, Jeremy, Zamanian, Sara, Reveille, John D., Arnett, Frank C., Pedroza, Claudia, and Mayes, Maureen D.

Published
2015
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42. ADAM10-mediated ephrin-B2 shedding promotes myofibroblast activation and organ fibrosis

Author

Lagares, David, Ghassemi-Kakroodi, Parisa, Tremblay, Caroline, Santos, Alba, Probst, Clemens K, Franklin, Alicia, Santos, Daniela M, Grasberger, Paula, Ahluwalia, Neil, Montesi, Sydney B, Shea, Barry S, Black, Katharine E, Knipe, Rachel, Blati, Meryem, Baron, Murray, Wu, Brian, Fahmi, Hassan, Gandhi, Rajiv, Pardo, Annie, Selman, Moisés, Wu, Jiangping, Pelletier, Jean-Pierre, Martel-Pelletier, Johanne, Tager, Andrew M, and Kapoor, Mohit

Subjects
Metalloenzymes -- Physiological aspects -- Genetic aspects -- Research, Fibrosis -- Development and progression -- Genetic aspects -- Care and treatment -- Research, Fibroblasts -- Physiological aspects -- Genetic aspects -- Research, Biological sciences, Health
Abstract

Maladaptive wound healing responses to chronic tissue injury result in organ fibrosis. Fibrosis, which entails excessive extracellular matrix (ECM) deposition and tissue remodeling by activated myofibroblasts, leads to loss of proper tissue architecture and organ function; however, the molecular mediators of myofibroblast activation have yet to be fully identified. Here we identify soluble ephrin-B2 (sEphrin-B2) as a new profibrotic mediator in lung and skin fibrosis. We provide molecular, functional and translational evidence that the ectodomain of membrane-bound ephrin-B2 is shed from fibroblasts into the alveolar airspace after lung injury. Shedding of sEphrin-B2 promotes fibroblast chemotaxis and activation via EphB3 and/or EphB4 receptor signaling. We found that mice lacking ephrin-B2 in fibroblasts are protected from skin and lung fibrosis and that a disintegrin and metalloproteinase 10 (ADAM10) is the major ephrin-B2 sheddase in fibroblasts. ADAM10 expression is increased by transforming growth factor (TGF)-[beta]1, and ADAM10-mediated sEphrin-B2 generation is required for TGF-[beta]1-induced myofibroblast activation. Pharmacological inhibition of ADAM10 reduces sEphrin-B2 levels in bronchoalveolar lavage and prevents lung fibrosis in mice. Consistent with the mouse data, ADAM10-sEphrin-B2 signaling is upregulated in fibroblasts from human subjects with idiopathic pulmonary fibrosis. These results uncover a new molecular mechanism of tissue fibrogenesis and identify sEphrin-B2, its receptors EphB3 and EphB4 and ADAM10 as potential therapeutic targets in the treatment of fibrotic diseases., Author(s): David Lagares (corresponding author) [1]; Parisa Ghassemi-Kakroodi [2]; Caroline Tremblay [2]; Alba Santos [1]; Clemens K Probst [1]; Alicia Franklin [1]; Daniela M Santos [1]; Paula Grasberger [1]; Neil [...]

Published
2017
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43. The association of sociodemographic and objectively-assessed disease variables with fatigue in systemic sclerosis: an analysis of 785 Canadian Scleroderma Research Group Registry patients

Author

Levis, Brooke, Kwakkenbos, Linda, Hudson, Marie, Baron, Murray, Thombs, Brett D., Baron, M., Hudson, M., Gyger, G., Pope, J., Larché, M., Khalidi, N., Masetto, A., Sutton, E., Robinson, D., Rodriguez-Reyna, T.S., Smith, D., Thorne, C., Fortin, P.R., Fritzler, M., and and the Canadian Scleroderma Research Group

Published
2017
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47. Geographical distribution of systemic sclerosis in Canada: An ecologic study based on the Canadian Scleroderma Research Group

Author

Muntyanu, Anastasiya, primary, Ouchene, Lydia, additional, Zhou, Siriu, additional, Hudson, Marie, additional, Rezaeian, Mohsen, additional, LaChance, Avery, additional, Litvinov, Ivan V., additional, Baron, Murray, additional, Netchiporouk, Elena, additional, Baron, M., additional, Hudson, M., additional, Gyger, G., additional, Pope, J., additional, Larche, M., additional, Khalidi, N., additional, Masetto, A., additional, Sutton, E., additional, Rodriguez-Reyna, T.S., additional, Maltez, N., additional, Thorne, C., additional, Fortin, P.R., additional, Ikic, A., additional, Robinson, D., additional, Jones, N., additional, LeClercq, S., additional, Docherty, P., additional, Smith, D., additional, and Fritzler, M., additional

Published
2022
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49. 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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