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01-05-2021 | Systemic Lupus Erythematosus | Cohort Studies

Indian SLE Inception cohort for Research (INSPIRE): the design of a multi-institutional cohort

Authors: Vineeta Shobha, Amita Aggarwal, Liza Rajasekhar, Avinash Jain, Ranjan Gupta, Bidyut Das, Ashish J. Mathew, Manish Rathi, Parasar Ghosh, Vir Singh Negi, Abhishek Tripathi, Ramnath Misra

Published in: Rheumatology International | Issue 5/2021

Abstract

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.

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Title: Indian SLE Inception cohort for Research (INSPIRE): the design of a multi-institutional cohort
Authors: Vineeta Shobha
Amita Aggarwal
Liza Rajasekhar
Avinash Jain
Ranjan Gupta
Bidyut Das
Ashish J. Mathew
Manish Rathi
Parasar Ghosh
Vir Singh Negi
Abhishek Tripathi
Ramnath Misra
Publication date: 01-05-2021
Publisher: Springer Berlin Heidelberg
Keyword: Systemic Lupus Erythematosus
Published in: Rheumatology International / Issue 5/2021
Print ISSN: 0172-8172
Electronic ISSN: 1437-160X
DOI: https://doi.org/10.1007/s00296-020-04766-3

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