Protocol for a partially nested randomized controlled trial to evaluate the effectiveness of the Scleroderma Patient-centered Intervention Network Support Group Leader EDucation (SPIN-SSLED) Program
Thombs, Brett D, Aguila, Kylene, Dyas, Laura, Carrier, Marie-Eve, Fedoruk, Claire, Horwood, Linda, Cañedo-Ayala, Mara, Sauvé, Maureen, Kwakkenbos, Linda, Malcarne, Vanessa L, El-Baalbaki, Ghassan, Peláez, Sandra, Connolly, Kerri, Hudson, Marie, Platt, Robert W
Published in Current controlled trials in cardiovascular medicine (12.12.2019)
Published in Current controlled trials in cardiovascular medicine (12.12.2019)
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Journal Article
Validation of the COVID-19 Fears Questionnaires for Chronic Medical Conditions: A Scleroderma Patient-centered Intervention Network COVID-19 Cohort study
Wu, Yin, Kwakkenbos, Linda, Henry, Richard S., Tao, Lydia, Harb, Sami, Bourgeault, Angelica, Carrier, Marie-Eve, Levis, Brooke, Sun, Ying, Bhandari, Parash Mani, Carboni-Jiménez, Andrea, Gagarine, Maria, He, Chen, Krishnan, Ankur, Negeri, Zelalem F., Neupane, Dipika, Mouthon, Luc, Bartlett, Susan J., Benedetti, Andrea, Thombs, Brett D., Culos-Reed, Nicole, El-Baalbaki, Ghassan, Hebblethwaite, Shannon, Patten, Scott, Varga, John, Bustamante, Laura, Duchek, Delaney, Ellis, Kelsey, Rice, Danielle, Dyas, Laura, Fortuné, Catherine, Gietzen, Amy, Guillot, Geneviève, Lewis, Nancy, Nielsen, Karen, Richard, Michelle, Sauvé, Maureen, Welling, Joep
Published in Journal of psychosomatic research (01.12.2020)
Published in Journal of psychosomatic research (01.12.2020)
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Journal Article
Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study
Gumuchian, Stephanie T, Peláez, Sandra, Delisle, Vanessa C, Carrier, Marie-Eve, Jewett, Lisa R, El-Baalbaki, Ghassan, Fortune, Catherine, Hudson, Marie, Impens, Ann, Körner, Annett, Persmann, Jennifer, Kwakkenbos, Linda, Bartlett, Susan J, Thombs, Brett D
Published in PloS one (23.03.2016)
Published in PloS one (23.03.2016)
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Journal Article
Changes in work and adequacy of financial resources during COVID-19 among people with systemic sclerosis: A Scleroderma Patient-centered Intervention Network study
Adams, Claire, Nassar, Elsa-Lynn, Carrier, Marie-Eve, Kwakkenbos, Linda, Henry, Richard S, Virgili-Gervais, Gabrielle, Hu, Sophie, Bartlett, Susan J, Fortuné, Catherine, Gietzen, Amy, Gottesman, Karen, Guillot, Geneviève, Hudson, Marie, Lawrie-Jones, Amanda, Lewis, Nancy, Malcarne, Vanessa, Mayes, Maureen D, Patten, Scott B, Richard, Michelle, Sauvé, Maureen, Varga, John, Welling, Joep, Wojeck, Robyn, Mouthon, Luc, Benedetti, Andrea, Thombs, Brett D
Published in Journal of scleroderma and related disorders (01.10.2024)
Published in Journal of scleroderma and related disorders (01.10.2024)
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Journal Article
Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews
Wurz, Amanda, Ellis, Kelsey, Nordlund, Julia, Carrier, Marie-Eve, Cook, Vanessa, Gietzen, Amy, Adams, Claire, Nassar, Elsa-Lynn, Rice, Danielle B, Fortune, Catherine, Guillot, Genevieve, Mieszczak, Tracy, Richard, Michelle, Sauve, Maureen, Thombs, Brett D
Published in Research involvement and engagement (27.01.2024)
Published in Research involvement and engagement (27.01.2024)
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Journal Article
Scleroderma Patient-centered Intervention Network—Scleroderma Support group Leader EDucation (SPIN-SSLED) program: non-randomised feasibility trial
Thombs, Brett D, Dyas, Laura, Pépin, Mia, Aguila, Kylene, Carrier, Marie-Eve, Tao, Lydia, Harb, Sami, Malcarne, Vanessa L, El-Baalbaki, Ghassan, Peláez, Sandra, Sauve, Maureen, Hudson, Marie, Platt, Robert W
Published in BMJ open (11.11.2019)
Published in BMJ open (11.11.2019)
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Journal Article
Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self-efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial
Thombs, Brett D, Levis, Brooke, Carrier, Marie-Eve, Dyas, Laura, Nordlund, Julia, Tao, Lydia, Aguila, Kylene, Bourgeault, Angelica, Konrad, Violet, Sauvé, Maureen, Connolly, Kerri, Henry, Richard S, Østba, Nora, Levis, Alexander W, Kwakkenbos, Linda, Malcarne, Vanessa L, El-Baalbaki, Ghassan, Hudson, Marie, Wurz, Amanda, Culos-Reed, S. Nicole, Platt, Robert W, Benedetti, Andrea, Elrod, Stephen, Fortuné, Catherine, Gietzen, Amy, Gottesman, Karen, Nielsen, Karen, Richard, Michelle, Rozee, Ken, Stephens, Nancy
Published in Orphanet journal of rare diseases (28.10.2022)
Published in Orphanet journal of rare diseases (28.10.2022)
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Journal Article
Randomized controlled trial of an internet-based self-guided hand exercise program to improve hand function in people with systemic sclerosis: the Scleroderma Patient-centered Intervention Network Hand Exercise Program (SPIN-HAND) trial
Kwakkenbos, Linda, Carrier, Marie-Eve, Welling, Joep, Levis, Brooke, Levis, Alexander, Sauve, Maureen, Turner, Kimberly, Tao, Lydia, Aguila, Kylene, Carboni-Jiménez, Andrea, Cañedo-Ayala, Mara, Harb, Sami, van den Ende, Cornelia, Hudson, Marie, van Breda, Ward, Nguyen, Christelle, Boutron, Isabelle, Rannou, François, Thombs, Brett, Mouthon, Luc, Henry, Richard, Bartlett, Susan, Fortuné, Catherine, Gottesman, Karen, Guillot, Geneviève, Hummers, Laura, Lawrie-Jones, Amanda, Malcarne, Vanessa, Mayes, Maureen, Nielson, Warren, Richard, Michelle, Assassi, Shervin, Benedetti, Andrea, El-Baalbaki, Ghassan, Ells, Carolyn, Fligelstone, Kim, Frech, Tracy, Gietzen, Amy, Harel, Daphna, Hinchcliff, Monique, Johnson, Sindhu, Larche, Maggie, Leite, Catarina, Nielsen, Karen, Pope, Janet, Sofia, Tatiana, Schouffoer, Anne, Suarez-Almazor, Maria, Agard, Christian, Abdallah, Nassim Ait, André, Marc, Bernstein, Elana, Berthier, Sabine, Bissonnette, Lyne, Bruns, Alessandra, Carreira, Patricia, Casadevall, Marion, Chaigne, Benjamin, Chung, Lorinda, Crichi, Benjamin, Denton, Christopher, Domsic, Robyn, Dunne, James, Dunogue, Bertrand, Fare, Regina, Farge-Bancel, Dominique, Fortin, Paul, Gordon, Jessica, Granel-Rey, Brigitte, Guffroy, Aurélien, Gyger, Genevieve, Hachulla, Eric, Herrick, Ariane, Hoa, Sabrina, Ikic, Alena, Jones, Niall, Kafaja, Suzanne, Khalidi, Nader, Lambert, Marc, Launay, David, Lee, Yvonne, Maillard, Hélène, Maltez, Nancy, Manning, Joanne, Marie, Isabelle, Lopez, Maria Martin, Martin, Thierry, Masetto, Ariel, Maurier, François, Mekinian, Arsene, Díaz, Sheila Melchor, Nikpour, Mandana, Olagne, Louis, Poindron, Vincent, Proudman, Susanna, Régent, Alexis, Rivière, Sébastien, Robinson, David, Rodríguez, Esther, Roux, Sophie
Published in Trials (12.12.2022)
Published in Trials (12.12.2022)
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Journal Article
Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional studyResearch in context
Robyn K. Wojeck, Mitchell R. Knisely, Donald E. Bailey, Tamara J. Somers, Linda Kwakkenbos, Marie-Eve Carrier, Warren R. Nielson, Susan J. Bartlett, Vanessa L. Malcarne, Marie Hudson, Brooke Levis, Andrea Benedetti, Luc Mouthon, Brett D. Thombs, Susan G. Silva, Claire E. Adams, Richard S. Henry, Catherine Fortuné, Karen Gottesman, Geneviève Guillot, Laura K. Hummers, Amanda Lawrie-Jones, Maureen D. Mayes, Michelle Richard, Maureen Sauvé, Shervin Assassi, Ghassan El-Baalbaki, Kim Fligelstone, Tracy Frech, Amy Gietzen, Daphna Harel, Monique Hinchcliff, Sindhu R. Johnson, Maggie Larche, Catarina Leite, Christelle Nguyen, Karen Nielsen, Janet Pope, François Rannou, Tatiana Sofia Rodriguez-Reyna, Anne A. Schouffoer, Maria E. Suarez-Almazor, Christian Agard, Nassim Ait Abdallah, Marc André, Elana J. Bernstein, Sabine Berthier, Lyne Bissonnette, Alessandra Bruns, Patricia Carreira, Marion Casadevall, Benjamin Chaigne, Lorinda Chung, Benjamin Crichi, Christopher Denton, Robyn Domsic, James V. Dunne, Bertrand Dunogue, Regina Fare, Dominique Farge-Bancel, Paul R. Fortin, Jessica Gordon, Brigitte Granel-Rey, Aurélien Guffroy, Genevieve Gyger, Eric Hachulla, Sabrina Hoa, Alena Ikic, Suzanne Kafaja, Nader Khalidi, Kimberly Lakin, Marc Lambert, David Launay, Yvonne C. Lee, Hélène Maillard, Nancy Maltez, Joanne Manning, Isabelle Marie, Maria Martin Lopez, Thierry Martin, Ariel Masetto, François Maurier, Arsene Mekinian, Sheila Melchor Díaz, Mandana Nikpour, Louis Olagne, Vincent Poindron, Susanna Proudman, Alexis Régent, Sébastien Rivière, David Robinson, Esther Rodríguez Almazar, Sophie Roux, Perrine Smets, Vincent Sobanski, Robert Spiera, Virginia Steen, Evelyn Sutton, Carter Thorne, John Varga
Published in EClinicalMedicine (01.08.2023)
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Published in EClinicalMedicine (01.08.2023)
Journal Article
Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program
Kwakkenbos, Linda, Østbø, Nora, Carrier, Marie-Eve, Nielson, Warren R, Fedoruk, Claire, Levis, Brooke, Henry, Richard S, Pope, Janet, Frech, Tracy, Gholizadeh, Shadi, Johnson, Sindhu R, Piotrowski, Pamela, Jewett, Lisa R, Gordon, Jessica, Chung, Lorinda, Bilsker, Dan, Tao, Lydia, Turner, Kimberly A, Cumin, Julie, Welling, Joep, Fortuné, Catherine, Leite, Catarina, Gottesman, Karen, Sauvé, Maureen, Reyna, Tatiana Sofia Rodriguez, Hudson, Marie, Larche, Maggie, van Breda, Ward, Suarez-Almazor, Maria E, Bartlett, Susan J, Malcarne, Vanessa L, Mayes, Maureen D, Boutron, Isabelle, Mouthon, Luc, Benedetti, Andrea, Thombs, Brett D
Published in Pilot and feasibility studies (26.02.2022)
Published in Pilot and feasibility studies (26.02.2022)
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Journal Article
International variations in new housing supply
Catherine Fortune, Charlotte, Moohan, James Anthony John
Published in International journal of housing markets and analysis (21.11.2008)
Published in International journal of housing markets and analysis (21.11.2008)
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Journal Article
Reasons for not participating in scleroderma patient support groups: a comparison of results from the North American and European scleroderma support group surveys
Kwakkenbos, Linda, Carboni-Jiménez, Andrea, Carrier, Marie-Eve, Pépin, Mia, Peláez, Sandra, Malcarne, Vanessa L., El-Baalbaki, Ghassan, Thombs, Brett D.
Published in Disability and rehabilitation (24.04.2021)
Published in Disability and rehabilitation (24.04.2021)
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Journal Article
Reasons for attending support groups and organizational preferences: the European scleroderma support group members survey
Gumuchian, Stephanie T, Delisle, Vanessa C, Kwakkenbos, Linda, Pépin, Mia, Carrier, Marie-Eve, Malcarne, Vanessa L, Peláez, Sandra, El-Baalbaki, Ghassan, Thombs, Brett D
Published in Disability and rehabilitation (10.04.2019)
Published in Disability and rehabilitation (10.04.2019)
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Journal Article
Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross‐Sectional Study
Gumuchian, Stephanie T., Delisle, Vanessa C., Peláez, Sandra, Malcarne, Vanessa L., El‐Baalbaki, Ghassan, Kwakkenbos, Linda, Jewett, Lisa R., Carrier, Marie‐Eve, Pépin, Mia, Thombs, Brett D., Connolly, Kerri, Riggs, Robert, Dyas, Laura, Elrod, Stephen, Gottesman, Karen, Fortune, Catherine, McCusker, Anna, Sauve, Maureen, Richard, Michelle, Stephens, Nancy
Published in Arthritis care & research (2010) (01.02.2018)
Published in Arthritis care & research (2010) (01.02.2018)
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Journal Article
Understanding coping strategies among people living with scleroderma: a focus group study
Gumuchian, Stephanie T, Peláez, Sandra, Delisle, Vanessa C, Carrier, Marie-Eve, Jewett, Lisa R, El-Baalbaki, Ghassan, Fortune, Catherine, Hudson, Marie, Körner, Annett, Kwakkenbos, Linda, Bartlett, Susan J, Thombs, Brett D
Published in Disability and rehabilitation (04.12.2018)
Published in Disability and rehabilitation (04.12.2018)
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Journal Article
Effect of support group peer facilitator training programmes on peer facilitator and support group member outcomes: a systematic review
Delisle, Vanessa C, Gumuchian, Stephanie T, Kloda, Lorie A, Boruff, Jill, El-Baalbaki, Ghassan, Körner, Annett, Malcarne, Vanessa L, Thombs, Brett D
Published in BMJ open (17.11.2016)
Published in BMJ open (17.11.2016)
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Journal Article
Reasons for non-participation in scleroderma support groups
Delisle, Vanessa C, Gumuchian, Stephanie T, Pelaez, Sandra, Malcarne, Vanessa L, El-Baalbaki, Ghassan, Körner, Annett, Hudson, Marie, Baron, Murray, Thombs, Brett D
Published in Clinical and experimental rheumatology (01.09.2016)
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Published in Clinical and experimental rheumatology (01.09.2016)
Journal Article
Reasons for attending support groups and organizational preferences: A replication study using the North American Scleroderma Support Group Survey
Pépin, Mia, Kwakkenbos, Linda, Carrier, Marie-Eve, Peláez, Sandra, El-Baalbaki, Ghassan, Malcarne, Vanessa L, Thombs, Brett D
Published in Journal of scleroderma and related disorders (01.10.2019)
Published in Journal of scleroderma and related disorders (01.10.2019)
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Journal Article
The Scleroderma Research Topics Survey for patients and health care professionals: A Scleroderma Patient-centered Intervention Network Project
Tao, Lydia, Fedoruk, Claire, Turner, Kimberly A, Cumin, Julie, Carrier, Marie-Eve, Carboni-Jiménez, Andrea, Pépin, Mia R, Kwakkenbos, Linda, Thombs, Brett D
Published in Journal of scleroderma and related disorders (01.10.2019)
Published in Journal of scleroderma and related disorders (01.10.2019)
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Journal Article
The Scleroderma Patient-Centered Intervention Network Self-Management Program: Protocol for a Randomized Feasibility Trial
Carrier, Marie-Eve, Kwakkenbos, Linda, Nielson, Warren R, Fedoruk, Claire, Nielsen, Karen, Milette, Katherine, Pope, Janet, Frech, Tracy, Gholizadeh, Shadi, Hummers, Laura, Johnson, Sindhu R, Piotrowski, Pamela, Jewett, Lisa, Gordon, Jessica, Chung, Lorinda, Bilsker, Dan, Turner, Kimberly A, Cumin, Julie, Welling, Joep, Fortune, Catherine, Leite, Catarina, Gottesman, Karen, Sauve, Maureen, Rodríguez-Reyna, Tatiana S, Hudson, Marie, Larche, Maggie, van Breda, Ward, Suarez-Almazor, Maria E, Bartlett, Susan J, Malcarne, Vanessa L, Mayes, Maureen D, Boutron, Isabelle, Mouthon, Luc, Wigley, Fredrick, Thombs, Brett D
Published in JMIR research protocols (24.04.2020)
Published in JMIR research protocols (24.04.2020)
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