Pub Date : 2026-01-21DOI: 10.1016/S2665-9913(25)00284-X
Jeanette Andersen, Rosaria Talaric, Diana Marinello, Silvia Aguilera, Ilaria Galetti, Matilde Bandeira, Jose Ballarin Castan, Jelena Blagojevic, Coralie Bouillot, Camelia Bucsa, Sara Cannizzo, Lorenzo Cavagna, Magdalena Ciupera, Eva Collado, Alain Cornet, Laura Damian, Louise Diederichsen, Olga Drapalova, Elena Elefante, Sue Farrington, Charissa Frank, Andrea Gaglioti, Serena Guiducci, Vera Guimaraes, Ramona Luciu, Lisa Matthews, Gianluca Moroncini, Marzena Olesińska, Alexander Patsalias, Isabelle Peene, Silvia Piantoni, Carmen Pizzorni, Sabrina Paolino, Micheline Pha, Cristina Pamfil, Jamy Scheerhoorn-Pullen, Silke Schlüter, Rossana Scrivo, Savino Sciascia, Monica Testoni, Ana Vieira, Maurizio Cutolo, Gerd Burmester, Marta Mosca
In rare and complex connective tissue diseases, patient partnership is essential to address diagnostic delays, fragmented care, unmet needs, and the research agenda. European Reference Network (ERN) ReCONNET, the network dedicated to rare and complex connective tissue diseases, has implemented a structured and transferable model of patient partnership. Patients contribute to every phase of research and care development: from identifying unmet needs to co-authoring scientific publications. Patient input also shapes educational initiatives and strategic planning. By institutionalising partnership through governance structures and shared decision-making processes, ERN ReCONNET shows that involving patients as equal stakeholders enhances the relevance, quality, and effect of activities. This Personal View was co-written with the direct partnership of authors with lived experience of rare and complex connective tissue diseases and reports a model that can be adapted to other rare diseases and rheumatological settings, promoting a culture of patient-centred innovation in health-care systems.
{"title":"Patient partnership model in rare and complex rheumatological conditions: research and beyond in European Reference Network ReCONNET.","authors":"Jeanette Andersen, Rosaria Talaric, Diana Marinello, Silvia Aguilera, Ilaria Galetti, Matilde Bandeira, Jose Ballarin Castan, Jelena Blagojevic, Coralie Bouillot, Camelia Bucsa, Sara Cannizzo, Lorenzo Cavagna, Magdalena Ciupera, Eva Collado, Alain Cornet, Laura Damian, Louise Diederichsen, Olga Drapalova, Elena Elefante, Sue Farrington, Charissa Frank, Andrea Gaglioti, Serena Guiducci, Vera Guimaraes, Ramona Luciu, Lisa Matthews, Gianluca Moroncini, Marzena Olesińska, Alexander Patsalias, Isabelle Peene, Silvia Piantoni, Carmen Pizzorni, Sabrina Paolino, Micheline Pha, Cristina Pamfil, Jamy Scheerhoorn-Pullen, Silke Schlüter, Rossana Scrivo, Savino Sciascia, Monica Testoni, Ana Vieira, Maurizio Cutolo, Gerd Burmester, Marta Mosca","doi":"10.1016/S2665-9913(25)00284-X","DOIUrl":"10.1016/S2665-9913(25)00284-X","url":null,"abstract":"<p><p>In rare and complex connective tissue diseases, patient partnership is essential to address diagnostic delays, fragmented care, unmet needs, and the research agenda. European Reference Network (ERN) ReCONNET, the network dedicated to rare and complex connective tissue diseases, has implemented a structured and transferable model of patient partnership. Patients contribute to every phase of research and care development: from identifying unmet needs to co-authoring scientific publications. Patient input also shapes educational initiatives and strategic planning. By institutionalising partnership through governance structures and shared decision-making processes, ERN ReCONNET shows that involving patients as equal stakeholders enhances the relevance, quality, and effect of activities. This Personal View was co-written with the direct partnership of authors with lived experience of rare and complex connective tissue diseases and reports a model that can be adapted to other rare diseases and rheumatological settings, promoting a culture of patient-centred innovation in health-care systems.</p>","PeriodicalId":48540,"journal":{"name":"Lancet Rheumatology","volume":" ","pages":""},"PeriodicalIF":16.4,"publicationDate":"2026-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146044174","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-21DOI: 10.1016/S2665-9913(25)00342-X
Joanna S C Shim, Jonathan Gower, Paul Swinton
{"title":"Top priorities for prehabilitation in orthopaedics.","authors":"Joanna S C Shim, Jonathan Gower, Paul Swinton","doi":"10.1016/S2665-9913(25)00342-X","DOIUrl":"https://doi.org/10.1016/S2665-9913(25)00342-X","url":null,"abstract":"","PeriodicalId":48540,"journal":{"name":"Lancet Rheumatology","volume":" ","pages":""},"PeriodicalIF":16.4,"publicationDate":"2026-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146044325","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-21DOI: 10.1016/S2665-9913(25)00341-8
Laura M J Hochstenbach, Joost G E Verbeek, Mark M Bakker, Maria B J Brokken-Peters, Pim van den Dungen, Daniëlle van Gulik, Toon van Helmond, Mirjam Libbers, Clementine Ophuis, Marieke D Spreeuwenberg, Harald E Vonkeman, Astrid van Tubergen
Background: To ensure that digital health applications reflect real-world needs and preferences, meaningful public and patient involvement is essential throughout the design process. However, existing patient and public involvement frameworks often fall short in guiding the fast-paced, iterative nature of digital health innovations. This study aimed to examine how patient and public involvement was embedded in the development and real-world testing of MyRA, a web-based self-monitoring application designed for and with people with rheumatoid arthritis, and explored the impact of this involvement.
Methods: We used a multimethod, qualitative approach with retrospective analysis of multiple data sources. Documents from focus groups and co-creation sessions were used to examine the timing, form, and influence of patient and public involvement on design. A post-study questionnaire captured real-world experiences with MyRA. Steering group meeting notes assessed alignment with European Alliance of Associations for Rheumatology (EULAR) recommendations for involvement of patient research partners in research. Reflective steering group meetings provided further insights. All findings were synthesised and triangulated using inductive and deductive analyses.
Findings: Patient research partners and experts by experience were involved throughout the project and influenced key design decisions. The post-study questionnaire revealed both positive experiences and challenges, including varied engagement patterns and preferences for application features. Overall, involvement of patient research partners in the project aligned well with the EULAR recommendations, and collaboration was seen as valuable, although sometimes complex. These insights informed a set of practice-informed considerations for meaningful patient and public involvement in digital health research.
Interpretation: Continuous patient and public involvement across application development phases can strengthen digital health innovation but requires broader user validation beyond a core group, managing different stakeholder perspectives and expectations, and ensuring clear structures for collaboration. The findings offer practical considerations to tailor patient and public involvement frameworks for use in iterative, fast-moving digital health contexts.
{"title":"Strengthening patient and public involvement in digital health innovation: reflective analysis of the development and real-world testing of the MyRA application.","authors":"Laura M J Hochstenbach, Joost G E Verbeek, Mark M Bakker, Maria B J Brokken-Peters, Pim van den Dungen, Daniëlle van Gulik, Toon van Helmond, Mirjam Libbers, Clementine Ophuis, Marieke D Spreeuwenberg, Harald E Vonkeman, Astrid van Tubergen","doi":"10.1016/S2665-9913(25)00341-8","DOIUrl":"https://doi.org/10.1016/S2665-9913(25)00341-8","url":null,"abstract":"<p><strong>Background: </strong>To ensure that digital health applications reflect real-world needs and preferences, meaningful public and patient involvement is essential throughout the design process. However, existing patient and public involvement frameworks often fall short in guiding the fast-paced, iterative nature of digital health innovations. This study aimed to examine how patient and public involvement was embedded in the development and real-world testing of MyRA, a web-based self-monitoring application designed for and with people with rheumatoid arthritis, and explored the impact of this involvement.</p><p><strong>Methods: </strong>We used a multimethod, qualitative approach with retrospective analysis of multiple data sources. Documents from focus groups and co-creation sessions were used to examine the timing, form, and influence of patient and public involvement on design. A post-study questionnaire captured real-world experiences with MyRA. Steering group meeting notes assessed alignment with European Alliance of Associations for Rheumatology (EULAR) recommendations for involvement of patient research partners in research. Reflective steering group meetings provided further insights. All findings were synthesised and triangulated using inductive and deductive analyses.</p><p><strong>Findings: </strong>Patient research partners and experts by experience were involved throughout the project and influenced key design decisions. The post-study questionnaire revealed both positive experiences and challenges, including varied engagement patterns and preferences for application features. Overall, involvement of patient research partners in the project aligned well with the EULAR recommendations, and collaboration was seen as valuable, although sometimes complex. These insights informed a set of practice-informed considerations for meaningful patient and public involvement in digital health research.</p><p><strong>Interpretation: </strong>Continuous patient and public involvement across application development phases can strengthen digital health innovation but requires broader user validation beyond a core group, managing different stakeholder perspectives and expectations, and ensuring clear structures for collaboration. The findings offer practical considerations to tailor patient and public involvement frameworks for use in iterative, fast-moving digital health contexts.</p><p><strong>Funding: </strong>Health Holland.</p>","PeriodicalId":48540,"journal":{"name":"Lancet Rheumatology","volume":" ","pages":""},"PeriodicalIF":16.4,"publicationDate":"2026-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146044143","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-09DOI: 10.1016/S2665-9913(25)00345-5
Weijin Zhang, Guangzhou Du, Shaoyu Zheng, Zexuan Zhou, Haibin Li, Shijian Hu, Kedi Zheng, Jianqun Lin, Qisheng Lin, Barbara Ruaro, Marco Matucci-Cerinic, Daniel E Furst, Yukai Wang
{"title":"Isolated muscular tuberculosis with secondary haemophagocytic lymphohistiocytosis.","authors":"Weijin Zhang, Guangzhou Du, Shaoyu Zheng, Zexuan Zhou, Haibin Li, Shijian Hu, Kedi Zheng, Jianqun Lin, Qisheng Lin, Barbara Ruaro, Marco Matucci-Cerinic, Daniel E Furst, Yukai Wang","doi":"10.1016/S2665-9913(25)00345-5","DOIUrl":"https://doi.org/10.1016/S2665-9913(25)00345-5","url":null,"abstract":"","PeriodicalId":48540,"journal":{"name":"Lancet Rheumatology","volume":" ","pages":""},"PeriodicalIF":16.4,"publicationDate":"2026-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145960169","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-11-18DOI: 10.1016/S2665-9913(25)00319-4
Audai H Abudayeh , Iakiv V Fishchenko
{"title":"An imaging crisis in axial spondyloarthritis","authors":"Audai H Abudayeh , Iakiv V Fishchenko","doi":"10.1016/S2665-9913(25)00319-4","DOIUrl":"10.1016/S2665-9913(25)00319-4","url":null,"abstract":"","PeriodicalId":48540,"journal":{"name":"Lancet Rheumatology","volume":"8 1","pages":"Page e7"},"PeriodicalIF":16.4,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145574869","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-01-01Epub Date: 2025-10-14DOI: 10.1016/S2665-9913(25)00252-8
Clément Triaille PhD , Prof Patrick Durez MD , Francesco Natalucci MD , Prof Rik Lories PhD , Prof Peter C Taylor PhD
Synovial tissue is widely considered to be a strong candidate for contributing to the development of individualised therapeutic strategies for the treatment and management of rheumatoid arthritis. Recently, several factors have enabled major developments in synovial tissue analysis: (1) improvement in synovial tissue biopsy techniques; (2) availability of powerful biotechnologies with increasing granularity; (3) recruitment of larger cohorts of patients; (4) development of recommendations to standardise synovial tissue analysis; and (5) an expanded therapeutic armamentarium of targeted therapies. Although recent studies have suggested the existence of rheumatoid arthritis subtypes based on the synovial tissue inflammatory profile, with potential therapeutic implications, other studies have yielded different results. In this Viewpoint we discuss and contextualise the findings of recent major studies in the field of synovial tissue. We highlight how disease activity, synovial tissue inflammatory burden, and response to therapy are interdependent features in rheumatoid arthritis, both earlier and later in the disease course. From there, we discuss how this multidirectional relationship has impacted (and potentially influenced the interpretation of) the findings of synovial tissue-based studies. Finally, we discuss the different hypotheses explaining the link between synovial tissue, clinical features, and therapeutic response.
{"title":"The relationship between clinical disease activity, synovial inflammatory profile, and treatment response in rheumatoid arthritis","authors":"Clément Triaille PhD , Prof Patrick Durez MD , Francesco Natalucci MD , Prof Rik Lories PhD , Prof Peter C Taylor PhD","doi":"10.1016/S2665-9913(25)00252-8","DOIUrl":"10.1016/S2665-9913(25)00252-8","url":null,"abstract":"<div><div>Synovial tissue is widely considered to be a strong candidate for contributing to the development of individualised therapeutic strategies for the treatment and management of rheumatoid arthritis. Recently, several factors have enabled major developments in synovial tissue analysis: (1) improvement in synovial tissue biopsy techniques; (2) availability of powerful biotechnologies with increasing granularity; (3) recruitment of larger cohorts of patients; (4) development of recommendations to standardise synovial tissue analysis; and (5) an expanded therapeutic armamentarium of targeted therapies. Although recent studies have suggested the existence of rheumatoid arthritis subtypes based on the synovial tissue inflammatory profile, with potential therapeutic implications, other studies have yielded different results. In this Viewpoint we discuss and contextualise the findings of recent major studies in the field of synovial tissue. We highlight how disease activity, synovial tissue inflammatory burden, and response to therapy are interdependent features in rheumatoid arthritis, both earlier and later in the disease course. From there, we discuss how this multidirectional relationship has impacted (and potentially influenced the interpretation of) the findings of synovial tissue-based studies. Finally, we discuss the different hypotheses explaining the link between synovial tissue, clinical features, and therapeutic response.</div></div>","PeriodicalId":48540,"journal":{"name":"Lancet Rheumatology","volume":"8 1","pages":"Pages e66-e73"},"PeriodicalIF":16.4,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145313750","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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