An early view of the international Sjögren's syndrome registry.

An early view of the international Sjögren's syndrome registry.
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DOI:
10.1002/art.24397
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发表时间:
2009-05-15
影响因子:
--
通讯作者:
Greenspan, John S.
Greenspan, John S.
中科院分区:
其他
文献类型:
--
作者:
Daniels, Troy E.;Criswell, Lindsey A.;Shiboski, Caroline;Shiboski, Stephen;Lanfranchi, Hector;Dong, Yi;Schiodt, Morten;Umehara, Hisanori;Sugai, Susumu;Challacombe, Stephen;Greenspan, John S.

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在主要的自身免疫性结缔组织疾病中,干燥综合征(SS)可能是最不了解的。原发性和继发性SS都有发生,但其表型尚未明确。自1965年以来,至少有10套SS的诊断/分类标准被应用(1-11),但没有一套被美国流变学学会普遍采用或接受。这些标准通常识别具有相似临床特征的患者,但不一定具有共同的疾病过程。关于SS的纵向数据很少。缺乏公认的分类标准导致了个体患者诊断的延迟,并由于样本量小和诊断的患者人群异质性而阻碍了对SS的研究。为了解决这些问题,正在进行的Sjören国际合作临床联盟(SICCA)从2003年开始在美国国立卫生研究院的合同下获得资助。SICCA项目的目标是:1)设计和实施一个国际SS登记系统,用于收集和存储临床数据和生物标本; 2)制定普遍适用的SS标准化分类/诊断标准; 3)为NIH或类似机构资助的SS未来研究提供这些资源。
Of the major autoimmune connective tissue diseases, Sjören’s syndrome (SS) is perhaps the least well understood. Both primary and secondary forms of SS occur, but their phenotypes are not well defined. No less than 10 sets of diagnostic/classification criteria for SS have been applied since 1965 (1–11), but none have been universally adopted or accepted by the American College of Rheumatology. These criteria have often identified patients with similar clinical features, but not necessarily with a common disease process. There is scant longitudinal data on SS. The absence of recognized classification criteria contributes to delays in diagnosis for individual patients and hampers research into SS due to small sample sizes and heterogeneously diagnosed patient populations.To address these issues, the ongoing Sjören’s International Collaborative Clinical Alliance (SICCA) was funded under a US National Institutes of Health contract beginning in 2003. The SICCA project has the goals of 1) designing and implementing an international SS registry for collecting and storing clinical data and biospecimens; 2) developing standardized classification/diagnostic criteria for SS that are universally applicable; and 3) providing these resources for future studies of SS funded by the NIH or comparable agencies.
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