Towards a minimal core dataset for systemic lupus erythematosus studies.

IF 3.5 2区 医学 Q1 RHEUMATOLOGY
Stephen McDonald, Jialin Teng, Chengde Yang, Michelle Barraclough, Graciela S Alarcon, Anca D Askanase, Sasha Bernatsky, Ann Elaine Clarke, Nathalie Costedoat-Chalumeau, Qiang Fu, Dafna D Gladman, John G Hanly, Alexandra C Legge, David Isenberg, Kenneth Kalunian, Diane L Kamen, Michelle A Petri, Anisur Rahman, Chuanyin Sun, Ting Li, Murray Urowitz, Alexandre Voskuyl, Daniel J Wallace, Juan Zhang, Ian N Bruce
{"title":"Towards a minimal core dataset for systemic lupus erythematosus studies.","authors":"Stephen McDonald, Jialin Teng, Chengde Yang, Michelle Barraclough, Graciela S Alarcon, Anca D Askanase, Sasha Bernatsky, Ann Elaine Clarke, Nathalie Costedoat-Chalumeau, Qiang Fu, Dafna D Gladman, John G Hanly, Alexandra C Legge, David Isenberg, Kenneth Kalunian, Diane L Kamen, Michelle A Petri, Anisur Rahman, Chuanyin Sun, Ting Li, Murray Urowitz, Alexandre Voskuyl, Daniel J Wallace, Juan Zhang, Ian N Bruce","doi":"10.1136/lupus-2025-001595","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>SLE is a complex, heterogenous autoimmune disease. SLE researchers do not always collect the same data, making comparative studies difficult. We aimed to ascertain what variables SLE clinical researchers commonly collect for SLE research. Our ultimate goal is to generate a minimal core dataset for future SLE studies.</p><p><strong>Methods: </strong>In 2020, we designed and distributed a questionnaire to members of the Systemic Lupus Erythematosus International Collaborating Clinics (SLICC) as well as additional active research centres in China. Our survey included 26 questions about the types of data that are routinely collected for research. Variables collected by ≥75% of participating respondents were used as a threshold for inclusion.</p><p><strong>Results: </strong>18 of 36 invited respondents replied (8 from USA/Canada, 5 from China and 5 from Europe). Many key variables in the domains of sociodemographics, SLE specific, comorbidities, baseline haematology/biochemistry/immunology and treatment data were collected by ≥75% respondents including the 1997 American College of Rheumatology (ACR) Classification Criteria (83%), SLE Disease Activity Index-2000 (82%), current treatment (100%), drug name, dose, frequency and start date (75-100%) and complement C3/4 (94%). A range of other items was collected by 50-<75% of respondents including SLICC 2012 Criteria (67%), SLICC/ACR Damage Index (68%) and Short Form Health Survey-36 (53%). Less than 50% of respondents collect certain items including European Alliance of Associations for Rheumatology/ACR 2019 criteria (33%), British Isles Lupus Assessment Group scores (12%) and pneumococcal vaccine status (39%).</p><p><strong>Conclusions: </strong>The frequency with which an initial set of variables is collected in SLE cohorts globally was identified and can form the basis from which to develop a core minimum dataset for SLE. Further refinement and common definitions will be needed to finalise a minimal core dataset suitable for widespread use.</p>","PeriodicalId":18126,"journal":{"name":"Lupus Science & Medicine","volume":"12 2","pages":""},"PeriodicalIF":3.5000,"publicationDate":"2025-09-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12458853/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Lupus Science & Medicine","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1136/lupus-2025-001595","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"RHEUMATOLOGY","Score":null,"Total":0}
引用次数: 0

Abstract

Objective: SLE is a complex, heterogenous autoimmune disease. SLE researchers do not always collect the same data, making comparative studies difficult. We aimed to ascertain what variables SLE clinical researchers commonly collect for SLE research. Our ultimate goal is to generate a minimal core dataset for future SLE studies.

Methods: In 2020, we designed and distributed a questionnaire to members of the Systemic Lupus Erythematosus International Collaborating Clinics (SLICC) as well as additional active research centres in China. Our survey included 26 questions about the types of data that are routinely collected for research. Variables collected by ≥75% of participating respondents were used as a threshold for inclusion.

Results: 18 of 36 invited respondents replied (8 from USA/Canada, 5 from China and 5 from Europe). Many key variables in the domains of sociodemographics, SLE specific, comorbidities, baseline haematology/biochemistry/immunology and treatment data were collected by ≥75% respondents including the 1997 American College of Rheumatology (ACR) Classification Criteria (83%), SLE Disease Activity Index-2000 (82%), current treatment (100%), drug name, dose, frequency and start date (75-100%) and complement C3/4 (94%). A range of other items was collected by 50-<75% of respondents including SLICC 2012 Criteria (67%), SLICC/ACR Damage Index (68%) and Short Form Health Survey-36 (53%). Less than 50% of respondents collect certain items including European Alliance of Associations for Rheumatology/ACR 2019 criteria (33%), British Isles Lupus Assessment Group scores (12%) and pneumococcal vaccine status (39%).

Conclusions: The frequency with which an initial set of variables is collected in SLE cohorts globally was identified and can form the basis from which to develop a core minimum dataset for SLE. Further refinement and common definitions will be needed to finalise a minimal core dataset suitable for widespread use.

迈向系统性红斑狼疮研究的最小核心数据集。
目的:SLE是一种复杂的异质自身免疫性疾病。SLE研究人员并不总是收集相同的数据,这使得比较研究变得困难。我们的目的是确定SLE临床研究人员通常在SLE研究中收集哪些变量。我们的最终目标是为未来的SLE研究生成一个最小的核心数据集。方法:在2020年,我们设计并分发了一份问卷给系统性红斑狼疮国际合作诊所(SLICC)以及中国其他活跃的研究中心的成员。我们的调查包括26个问题,涉及为研究而例行收集的数据类型。≥75%的受访者收集的变量作为纳入的阈值。结果:36名受邀受访者中有18人回复(美国/加拿大8人,中国5人,欧洲5人)。≥75%的受访者收集了社会人口统计学、SLE特异性、合并症、基线血液学/生物化学/免疫学和治疗数据领域的许多关键变量,包括1997年美国风湿病学会(ACR)分类标准(83%)、SLE疾病活动指数-2000(82%)、当前治疗(100%)、药物名称、剂量、频率和开始日期(75% -100%)和补体C3/4(94%)。50收集了一系列其他项目,结论:确定了在全球SLE队列中收集初始变量集的频率,并可以形成开发SLE核心最小数据集的基础。需要进一步细化和通用定义,以最终确定适合广泛使用的最小核心数据集。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 求助全文
来源期刊
Lupus Science & Medicine
Lupus Science & Medicine RHEUMATOLOGY-
CiteScore
5.30
自引率
7.70%
发文量
88
审稿时长
15 weeks
期刊介绍: Lupus Science & Medicine is a global, peer reviewed, open access online journal that provides a central point for publication of basic, clinical, translational, and epidemiological studies of all aspects of lupus and related diseases. It is the first lupus-specific open access journal in the world and was developed in response to the need for a barrier-free forum for publication of groundbreaking studies in lupus. The journal publishes research on lupus from fields including, but not limited to: rheumatology, dermatology, nephrology, immunology, pediatrics, cardiology, hepatology, pulmonology, obstetrics and gynecology, and psychiatry.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
联系我们:info@booksci.cn Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。 Copyright © 2023 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:604180095
Book学术官方微信