Department of Clinical Immunology and Rheumatology, St John's Medical College Hospital, Bengaluru, India.
Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, India.
Rheumatol Int. 2021 May;41(5):887-894. doi: 10.1007/s00296-020-04766-3. Epub 2021 Jan 12.
Systemic lupus erythematosus (SLE) cohorts across the world have allowed better understanding of SLE, including its bimodal mortality, and the impact of social factors and ethnicity on outcomes. The representation of patients from South Asia has been poor in the existing SLE cohorts across the world. Hence, we planned to initiate an inception cohort to understand the diversity of lupus in India. Indian SLE Inception cohort for REsearch (INSPIRE), planned over 5 years is a multi-centric cohort of adult and childhood lupus patients of Indian origin, fulfilling the SLICC-2012 classification criteria, with an aim to provide cross-sectional information on demography, ethnicity, socio-economic status, standard disease variables, quality of life, and prospective information on new events like hospitalization, infections, pregnancies, changes in disease activity, and damage. One of the other deliverables of this project is the establishment of a biorepository. The instruments to be used for each variable and outcome were finalized, and a web-enabled case report form was prepared to encompass SLEDAI, BILAG, SLICC damage scores, and Lupus quality-of-life index.Ten centers located in different geographic areas of India would enroll patients who are seen for the first time after the start of the study. In the first 8 months, 476 patients (63 children, 36 males) have been enrolled with a median disease duration of 10 (IQR 4-17) months and mucocutaneous features being the most prevalent clinical manifestations. INSPIRE is the first prospective Indian SLE cohort to study the diversity of Indian patients.
系统性红斑狼疮（SLE）的全球队列研究使人们更好地了解了 SLE，包括其双峰死亡率，以及社会因素和种族对结果的影响。南亚患者在全球现有的 SLE 队列中代表性不足。因此，我们计划启动一个初始队列来了解印度狼疮的多样性。印度狼疮初始队列研究（INSPIRE）计划历时 5 年，是一个多中心的成年和儿童印度裔狼疮患者队列，符合 SLICC-2012 分类标准，旨在提供横断面人口统计学、种族、社会经济地位、标准疾病变量、生活质量信息，以及前瞻性新发病事件，如住院、感染、妊娠、疾病活动和损伤变化的信息。该项目的另一个交付成果是建立一个生物库。已经确定了每个变量和结果的使用工具，并准备了一个基于网络的病例报告表，以包含 SLEDAI、BILAG、SLICC 损伤评分和狼疮生活质量指数。十个位于印度不同地理区域的中心将招募在研究开始后首次就诊的患者。在前 8 个月中，已经招募了 476 名患者（63 名儿童，36 名男性），中位疾病持续时间为 10（IQR 4-17）个月，粘膜皮肤特征是最常见的临床表现。INSPIRE 是第一个前瞻性的印度 SLE 队列研究，旨在研究印度患者的多样性。
