埃勒斯-当洛综合征：临床实践指南的最新进展
Ehlers-Danlos syndromes: state of the art on clinical practice guidelines.
作者信息
Sulli Alberto, Talarico Rosaria, Scirè Carlo Alberto, Avcin Tadej, Castori Marco, Ferraris Alessandro, Frank Charissa, Grunert Jürgen, Paolino Sabrina, Bombardieri Stefano, Schneider Matthias, Smith Vanessa, Cutolo Maurizio, Mosca Marta, Malfait Fransiska
机构信息
Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, University of Genova, IRCCS Ospedale Policlinico San Martino, Genova, Italy.
Rheumatology Unit, AOU Pisana, Pisa, Italy.
出版信息
RMD Open. 2018 Oct 18;4(Suppl 1):e000790. doi: 10.1136/rmdopen-2018-000790. eCollection 2018.
OBJECTIVE
To report the effort of the European Reference Network for Rare and Complex CONnective tissue and musculoskeletal diseases NETwork working group on Ehlers-Danlos syndromes (EDS) and related disorders to assess current available clinical practice guidelines (CPGs) specifically addressed to EDS, in order to identify potential clinician and patient unmet needs.
METHODS
Systematic literature search in PUBMED and EMBASE based on controlled terms (MeSH and Emtree) and keywords of the disease and publication type (CPGs). All the published articles were revised in order to identify existing CPGs on diagnosis, monitoring and treatment of EDS.
RESULTS
Literature revision detected the absence of papers reporting good quality CPGs to optimise EDS patient care. The current evidence-based literature regarding clinical guidelines for the EDS was limited in size and quality, and there is insufficient research exploring the clinical features and interventions, and clinical decision-making are currently based on theoretical and limited research evidences.
CONCLUSIONS
Many clinician and patient unmet needs have been identified.
目的
报告欧洲罕见和复杂结缔组织及肌肉骨骼疾病参考网络（NETwork）工作组针对埃勒斯-当洛综合征（EDS）及相关疾病所做的工作，以评估当前专门针对EDS的临床实践指南（CPG），从而确定临床医生和患者尚未满足的潜在需求。
方法
基于受控术语（医学主题词表和欧洲医学术语词表）以及疾病关键词和出版物类型（CPG），在PubMed和EMBASE中进行系统的文献检索。对所有已发表的文章进行修订，以确定关于EDS诊断、监测和治疗的现有CPG。
结果
文献修订发现，缺乏报告高质量CPG以优化EDS患者护理的论文。目前关于EDS临床指南的循证文献在规模和质量上都很有限，对临床特征和干预措施的研究不足，临床决策目前基于理论和有限的研究证据。
结论
已确定许多临床医生和患者尚未满足的需求。
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