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#RheumTwitter - the Rise of Social Media in Rheumatology: Research, Collaboration, Education, and Engagement. #风湿病推特-风湿病学社交媒体的兴起:研究、合作、教育和参与。
Pub Date : 2022-12-01 DOI: 10.2478/rir-2022-0030
Sasha Saadia Ali, Chris Wincup

Social media broadly refers to an internet-based platform that allows for the online publication of content that is shared across a virtual community or network. Over recent years, there has been growing utilization of social media in the medical community. The field of rheumatology is no different. Social media allows for the sharing of information among rheumatologists, which can be useful in online education, disseminating research findings, forming new networks of collaborators, and discussing the latest advances in the field. However, there are several challenges facing clinicians using social media. As such, regulatory bodies have produced advisory codes of conduct to ensure better awareness concerning the appropriate use of social media among clinicians. In addition, clinicians (even those who do not use social media) need to be mindful of the fact that many patients will use these online platforms to find information, and with this comes the risk of false information. In this review, we highlight the benefits and challenges facing rheumatologists in relation to the world of social media.

社交媒体广义上指的是一个基于互联网的平台,它允许在线发布内容,并在虚拟社区或网络上共享。近年来,医学界越来越多地使用社交媒体。风湿病学领域也不例外。社交媒体允许风湿病学家之间分享信息,这在在线教育、传播研究成果、形成新的合作者网络和讨论该领域的最新进展方面很有用。然而,临床医生在使用社交媒体时面临着一些挑战。因此,监管机构制定了咨询行为准则,以确保临床医生更好地认识到社交媒体的适当使用。此外,临床医生(即使是那些不使用社交媒体的医生)需要注意这样一个事实,即许多患者会使用这些在线平台来查找信息,这就带来了虚假信息的风险。在这篇综述中,我们强调了风湿病学家在社交媒体世界中面临的益处和挑战。
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引用次数: 1
Social Media and Rheumatology Societies: Strategic Insights. 社会媒体和风湿病学会:战略见解。
Pub Date : 2022-12-01 DOI: 10.2478/rir-2022-0032
Dominique Alvarillo, Elena Nikiphorou

The use of social media has heralded a new era of communication and social interaction, presenting important and often untapped potential and opportunity for professional organizations to thrive. In this article, we discuss the use of social media by rheumatology societies, focusing on strategy and marketing development. We share first-hand insights and tips for using social media in a way that can help rheumatology societies and professional organizations overall to thrive.

社交媒体的使用预示着沟通和社交互动的新时代的到来,为专业组织的蓬勃发展提供了重要的、往往尚未开发的潜力和机会。在这篇文章中,我们讨论了风湿病学会对社交媒体的使用,重点是策略和营销发展。我们分享使用社交媒体的第一手见解和技巧,以帮助风湿病学会和专业组织整体蓬勃发展。
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引用次数: 1
Bilateral Ureterohydronephrosis after Intestinal Pseudo-obstruction in a Patient with Systemic Lupus Erythematosus. 系统性红斑狼疮患者假性肠梗阻后双侧输尿管积水1例。
Pub Date : 2022-12-01 DOI: 10.2478/rir-2022-0037
Wanting Qi, Yangzhong Zhou, Jiuliang Zhao
A 22-year-old female presented with an 18-month history of frequent urination and urinary urgency. Her physical examination showed a cushingoid appearance and no ob-vious tenderness or palpable mass in the renal and ureteral walking areas. Her past medical history was notable for systemic lupus erythematosus (SLE) and lupus nephri-tis diagnosed 10 years ago, and SLE-associated intestinal pseudo-obstruction (IPO) diagnosed 3 years ago. Her IPO achieved remission after treatment with intravenous methylprednisolone and cyclophosphamide (cumulative dose 5 g). Her methylprednisolone was tapered to 8 mg/day, when she suffered from frequent urination and urinary urgency. Laboratory tests showed a urinary albumin level of 0.3 g/L and a serum creatinine
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引用次数: 0
Social Media and the Patient - on Education and Empowerment. 社会媒体与患者——教育与赋权。
Pub Date : 2022-12-01 DOI: 10.2478/rir-2022-0028
Geraldine T Zamora

Social media has unprecedentedly impacted the world, and this includes patients and physicians alike. This article provides a glimpse of the pros and cons of social media to both parties, and how, despite its pitfalls, rheumatologists can put its use in daily practice to help bridge the gap between, and among, rheumatologists and patients to ultimately improve patient outcomes.

社交媒体对世界的影响前所未有,包括病人和医生。这篇文章向双方提供了社交媒体的利弊,以及风湿病学家如何在日常实践中使用它来帮助弥合风湿病学家和患者之间的差距,最终改善患者的治疗效果,尽管存在缺陷。
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引用次数: 2
Social Media for Research Discourse, Dissemination, and Collaboration in Rheumatology. 风湿病学研究话语、传播和合作的社会媒体。
Pub Date : 2022-12-01 DOI: 10.2478/rir-2022-0031
Ariella Coler-Reilly, Elizabeth R Graef, Alfred H J Kim, Jean W Liew, Michael S Putman, Sebastian E Sattui, Kristen J Young, Jeffrey A Sparks

Social media has become an important venue for rheumatologists, patients, organizations, and other stakeholders to discuss recent research advances in diagnosis and management of rheumatic disorders. In this article, we describe the current state of how social media may enhance dissemination, discourse, and collaboration in rheumatology research. Social media may refer to social platforms like Twitter and Instagram or digital media like podcasts and other websites that are operated for providing as free, open-access medical education (FOAM). Twitter has been one of the most active social media venues and continues to host a vibrant rheumatology community. Examples of research discussions on Twitter include organic user tweets, educational threads ("tweetorials"), live-tweeting academic conferences, and journals posting recently-accepted articles. Some research collaborations have been initiated through social media interactions. Social media may also directly contribute to research by facilitating the recruitment of study participants and the collection of survey-based data. Thus, social media is an evolving and important tool to enhance research discourse, dissemination, and collaboration in rheumatology.

社交媒体已经成为风湿病学家、患者、组织和其他利益相关者讨论风湿病诊断和管理方面的最新研究进展的重要场所。在这篇文章中,我们描述了社交媒体如何加强风湿病研究的传播、话语和合作的现状。社交媒体可以指Twitter和Instagram等社交平台,也可以指播客等数字媒体和其他为提供免费、开放的医学教育(FOAM)而运营的网站。推特一直是最活跃的社交媒体场所之一,并继续主办一个充满活力的风湿病社区。Twitter上的研究讨论的例子包括有机用户tweet、教育线程(“twee软文”)、实时tweet学术会议和发布最近被接受的文章的期刊。一些研究合作是通过社交媒体互动发起的。社交媒体也可以通过促进研究参与者的招募和基于调查的数据的收集,直接促进研究。因此,社交媒体是一个不断发展的重要工具,可以加强风湿病学的研究论述、传播和合作。
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引用次数: 1
RheumCloud App: A Novel Mobile Application for the Management of Rheumatic Diseases Patients in China. 风湿云App:中国风湿病患者管理的新型移动应用。
Pub Date : 2022-12-01 DOI: 10.2478/rir-2022-0033
Can Huang, Jiuliang Zhao, Xinping Tian, Qian Wang, Dong Xu, Mengtao Li, Xiaofeng Zeng

This review summarizes the history, function, application, and achievement of the RheumCloud App as a novel smartphone application. This App reflects the development of the Chinese Rheumatism Data Center (CRDC), which provides not only a technical platform for the database and registry of rheumatic diseases (RDs) in China, but also a close tie between Chinese rheumatologists and patients with RDs. Throughout the past decade, CRDC has successfully built the world's largest nationwide database for RDs. A total of 2074 tertiary referral centers consisting of 8051 rheumatologists participated in the registry. RheumCloud App, which is representative of the success of CRDC, has played a central role in supporting patient cohort registration, biosample collection, and patient education. Based on the data of the Rhuem-Cloud App, three national key research projects have been funded and a series of research papers have been published.

本文综述了风湿性云应用程序作为一种新型智能手机应用程序的历史、功能、应用和成就。这款App反映了中国风湿病数据中心(CRDC)的发展,它不仅为中国风湿病数据库和注册提供了一个技术平台,也为中国风湿病学家和风湿病患者提供了一个紧密的联系。在过去的十年中,CRDC成功地建立了世界上最大的全国性rd数据库。共有2074个三级转诊中心,8051名风湿病学家参与了登记。风湿云应用程序是CRDC成功的代表,在支持患者队列登记、生物样本收集和患者教育方面发挥了核心作用。以流云App数据为基础,获国家重点攻关项目3项,发表系列研究论文。
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引用次数: 1
Editorial for "Social Media in Rheumatology". “风湿病学的社交媒体”社论。
Pub Date : 2022-12-01 DOI: 10.2478/rir-2022-0025
Priscilla C Wong, Yew Kuang Cheng
The Asia Pacific League of Associations for Rheumatology (APLAR) Young Rheumatologists (AYR) group is a network of young rheumatologists in the Asia Pacific region united to move forward in education, collaboration, and research in the Asia Pacific and beyond. AYR is an integrated part of the APLAR community, representing the full spectrum of rheumatology. The AYR Board first organized a “Social Media in Rheumatology” symposium at the annual APLAR Congress in 2021. This pioneering educational activity connected aspiring young clinicians from different countries and regions (China, Hong Kong [special administrative region {SAR} of China], India, Pakistan, the Philippines, Sri Lanka, the United Arab Emirates, and the United Kingdom [UK]) to share their knowledge and experience on social media via focused presentations and live dialogue. The feedback was exemplary and has opened the gateway for future collaboration among different societies of rheumatology. In this special edition covering “Social Media in Rheumatology”, AYR proudly further presents this impactful theme for our rheumatology community. We are honored and very excited to collaborate with several impassioned young academics from the Emerging European League Against Rheumatism (EULAR) NETwork (EMEUNET) and the American College of Rheumatology (ACR) in this particular issue. As citizens of the
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引用次数: 0
An Overview of Social Media within APLAR Rheumatology Societies. 美国风湿病学会的社交媒体概述。
Pub Date : 2022-12-01 DOI: 10.2478/rir-2022-0029
Himantha Atukorale

Rheumatology societies within the Asia Pacific League of Associations for Rheumatology (APLAR) serve a diverse community under challenging circumstances. The Asia-Pacific region is home to one of the fastest-growing social media populations. A survey was carried out to assess the status of these rheumatology societies' official social media platforms. An authentic source of patient information is the need of the hour in the era of digital therapeutics. Going forwards, APLAR should guide societies to establish reliable social media platforms.

亚太风湿病协会联盟(APLAR)中的风湿病学会在具有挑战性的环境下为多样化的社区服务。亚太地区是社交媒体人口增长最快的地区之一。进行了一项调查,以评估这些风湿病学会的官方社交媒体平台的状况。在数字治疗时代,病人信息的真实来源是时间的需要。展望未来,APLAR应该引导社会建立可靠的社交媒体平台。
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引用次数: 1
Successful Treatment with Bortezomib for Refractory Thrombotic Thrombocytopenic Purpura Associated with Systemic Lupus Erythematosus. 硼替佐米成功治疗难治性血栓性血小板减少性紫癜伴系统性红斑狼疮。
Pub Date : 2022-12-01 DOI: 10.2478/rir-2022-0036
Ruyu Yan, Shuang Zhou, Jinuo Wang, Huaxia Yang

Thrombotic thrombocytopenic purpura (TTP) is a life- threatening disease that can be secondary to systemic lupus erythematosus (SLE). The fist- line treatments of TTP are steroid, immunosuppressor and plasm exchange (PE). However, some patients may have a poor response to these treatments. Bortezomib is a selective proteasome inhibitor and widely used to treat patients with multiple myeloma (MM). In recent years, bortezomib has been used to treat patients with refractory TTP. Here we report a patient with refractory TTP associated with SLE and had a successful treatment with bortezomib.

血栓性血小板减少性紫癜(TTP)是一种危及生命的疾病,可继发于系统性红斑狼疮(SLE)。TTP的一线治疗是类固醇、免疫抑制剂和血浆交换(PE)。然而,一些患者可能对这些治疗反应不佳。硼替佐米是一种选择性蛋白酶体抑制剂,广泛用于治疗多发性骨髓瘤(MM)患者。近年来,硼替佐米已被用于治疗难治性TTP患者。在这里,我们报告了一例难治性TTP与SLE相关的患者,并用硼替佐米成功治疗。
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引用次数: 0
Olfactory Ecto-mesenchymal Stem Cell-derived Exosomes Ameliorate Murine Sjögren's Syndrome via Suppressing Tfh Cell Response. 嗅觉外充质干细胞衍生的外泌体通过抑制Tfh细胞反应改善小鼠Sjögren综合征。
Pub Date : 2022-12-01 DOI: 10.2478/rir-2022-0035
Ke Rui, Ziwei Shen, Na Peng, Futao Zhao, Yuan Tang, Shiyi Liu, Xinyi Xu, Chang Liu, Ling Wu, Jie Tian, Liwei Lu

Objectives: To investigate the effect of olfactory ecto-mesenchymal stem cell-derived exosomes (OE-MSC-Exos) on T follicular helper (Tfh) cell response and their implication in treating experimental Sjögrens syndrome (ESS).

Methods: C57BL/6 mice were immunized with salivary glands (SG) proteins to induce ESS mouse model. OE-MSC-Exos were added to the Tfh cell polarization condition, and the proportion of Tfh cells was detected by FCM. The PD-L1 of OE-MSCs was silenced with small interfering RNA to extract siPD-L1-OE-MSC-Exos.

Results: We found that transfer of OE-MSC-Exos markedly attenuated disease progression and reduced Tfh cell response in mice with ESS. In culture, OE-MSC-Exos potently inhibited the differentiation of Tfh cells from naïve T cells. Moreover, OE-MSC-Exos expressed high level of the ligand for the programmed cell death protein 1 (PD-L1), knocking down PD-L1 expression in OE-MSC-Exos significantly decreased their capacity to suppress Tfh cell differentiation in vitro. Consistently, transfer of OE-MSC-Exos with PD-L1 knockdown exhibited profoundly diminished therapeutic effect in ESS mice, accompanied with sustained Tfh cell response and high levels of autoantibody production.

Conclusion: Our results suggest that OE-MSC-Exos may exert their therapeutic effect in ameliorating ESS progression via suppressing Tfh cell response in a PD-L1-dependent manner.

目的:探讨嗅觉外充质干细胞衍生外泌体(OE-MSC-Exos)对T滤泡辅助细胞(Tfh)应答的影响及其在实验性Sjögrens综合征(ESS)治疗中的意义。方法:用唾液腺(SG)蛋白免疫C57BL/6小鼠,建立小鼠ESS模型。在Tfh细胞极化条件下加入OE-MSC-Exos, FCM检测Tfh细胞比例。用小干扰RNA沉默OE-MSCs的PD-L1,提取siPD-L1-OE-MSC-Exos。结果:我们发现OE-MSC-Exos的转移显著减缓了ESS小鼠的疾病进展并降低了Tfh细胞的反应。在培养中,OE-MSC-Exos能有效抑制Tfh细胞向naïve T细胞的分化。此外,OE-MSC-Exos高水平表达程序性细胞死亡蛋白1 (PD-L1)配体,降低OE-MSC-Exos中PD-L1的表达,显著降低其体外抑制Tfh细胞分化的能力。一致地,PD-L1敲低的OE-MSC-Exos的转移在ESS小鼠中表现出显著降低的治疗效果,伴随着持续的Tfh细胞反应和高水平的自身抗体产生。结论:我们的研究结果表明OE-MSC-Exos可能通过pd - l1依赖的方式抑制Tfh细胞反应来发挥其改善ESS进展的治疗作用。
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引用次数: 2
期刊
Rheumatology and immunology research
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