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

Detalhes bibliográficos
Autor(a) principal: Kwakkenbos, Linda
Data de Publicação: 2013
Outros Autores: 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, Ende, Cornelia H. van den, Hudson, Marie, Impens, Ann, Körner, Annett, Leite, Catarina da Silva Correia Pereira, Maia, Ângela, 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., Thombs, Brett D.
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/1822/27942
Resumo: Introduction: Psychosocial 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 analysis: SPIN 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 nterventions 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 dissemination: The 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.
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spelling 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 contextSclerodermaControlled trialIntroduction: Psychosocial 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 analysis: SPIN 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 nterventions 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 dissemination: The 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.(undefined)BMJ Publishing GroupUniversidade do MinhoKwakkenbos, LindaJewett, Lisa RBaron, MurrayBartlett, Susan J.Furst, DanGottesman, KarenKhanna, DineshMalcarne, Vanessa L.Mayes, Maureen D.Mouthon, LucPoiraudeau, SergeSauve, MaureenNielson, Warren R.Poole, Janet L.Assassi, ShervinBoutron, IsabelleElls, CarolynEnde, Cornelia H. van denHudson, MarieImpens, AnnKörner, AnnettLeite, Catarina da Silva Correia PereiraMaia, ÂngelaMendelson, CindyPope, JanetSteele, Russell J.Suarez-Almazor, Maria E.Ahmed, SaraCoronado-Montoya, StephanieDelisle, Vanessa C.Gholizadeh, ShadiJang, YeonaLevis, BrookeMilette, KatherineMills, Sarah D.Razykov, IlyaFox, Rina S.Thombs, Brett D.20132013-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/1822/27942eng2044-605510.1136/bmjopen-2013-003563http://bmjopen.bmj.com/content/3/8/e003563.full.pdf+htmlinfo:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2023-07-21T12:41:32Zoai:repositorium.sdum.uminho.pt:1822/27942Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T19:38:32.606861Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse
dc.title.none.fl_str_mv 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
title 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
spellingShingle 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
Kwakkenbos, Linda
Scleroderma
Controlled trial
title_short 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_sort 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
author_facet 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
Ende, Cornelia H. van den
Hudson, Marie
Impens, Ann
Körner, Annett
Leite, Catarina da Silva Correia Pereira
Maia, Ângela
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.
Thombs, Brett D.
author_role author
author2 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
Ende, Cornelia H. van den
Hudson, Marie
Impens, Ann
Körner, Annett
Leite, Catarina da Silva Correia Pereira
Maia, Ângela
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.
Thombs, Brett D.
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Universidade do Minho
dc.contributor.author.fl_str_mv 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
Ende, Cornelia H. van den
Hudson, Marie
Impens, Ann
Körner, Annett
Leite, Catarina da Silva Correia Pereira
Maia, Ângela
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.
Thombs, Brett D.
dc.subject.por.fl_str_mv Scleroderma
Controlled trial
topic Scleroderma
Controlled trial
description Introduction: Psychosocial 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 analysis: SPIN 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 nterventions 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 dissemination: The 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.
publishDate 2013
dc.date.none.fl_str_mv 2013
2013-01-01T00:00:00Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/1822/27942
url http://hdl.handle.net/1822/27942
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv 2044-6055
10.1136/bmjopen-2013-003563
http://bmjopen.bmj.com/content/3/8/e003563.full.pdf+html
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv BMJ Publishing Group
publisher.none.fl_str_mv BMJ Publishing Group
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron:RCAAP
instname_str Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron_str RCAAP
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reponame_str Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
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