Meeting report: MyoIN – Pan-India collaborative network for myositis research

Gupta, Latika; Appani, S.K.; Janardana, Ramya; Muhammed, Hafis; Lawrence, Able; Amin, Sanjiv; Shobha, Vineeta; Rajasekhar, Liza; Misra, Ramnath

doi:10.4103/injr.injr_40_19

Cited by 27 publications

(22 citation statements)

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“…Patients with ASS fulfilling Connor's criteria [ 6 ] [the presence of an ARS antibody (required criterion) and one or more of the following clinical features: RP, arthritis, ILD, fever (not attributable to another cause), mechanic's hands (thickened and cracked skin on hands, particularly at the fingertips)] were identified from the medical records of outpatients, inpatients of Nizam’s Institute of Medical Sciences and patients included in the MYOIN registry. MYOIN is a prospective, multicentre registry from India to study risk factors for susceptibility, severity and prognosis of inflammatory myopathies and maintains follow-up data and bio-repository of myositis patients [ 7 ]. Patients of ASS with ≥6 months of follow-up were enrolled as cases.…”

Section: Methodsmentioning

confidence: 99%

Clinical profile and treatment outcomes in antisynthetase syndrome: a tertiary centre experience

Sreevilasan¹,

Devarasetti²,

Narahari

et al. 2021

Rheumatology Advances in Practice

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Objectives The aim was to describe the clinical profile and outcomes in patients with antisynthetase syndrome (ASS) from a tertiary care centre. Methods The clinical data and investigations of all patients classified as ASS by Connors criteria over 5 years were recorded, and they were followed up prospectively. The median (interquartile range) was used for descriptive statistics. Clinical variables between the Jo-1 and non-Jo-1 groups and between patients with and without anti-Ro52 antibodies were compared using the χ2 test. Survival analysis was done using the log rank test. Results The 28 patients (23 females) had a median age of 42.5 (34.8–52.3) years, with a disease duration of 1.75 (0.6–3.8) years at diagnosis, and had a follow-up of 2 (0.25–4.25) years. Seronegative arthritis was seen in 23 of 28 patients. Non-specific interstitial pneumonia was seen in 19 patients with interstitial lung disease (ILD). Antibodies to Jo-1 (n = 17) were more frequent than non-Jo-1 antibodies (n = 11; five anti-PL-12, four anti-PL-7 and two anti-EJ). There was no significant difference in the prevalence of myositis (P = 0.07) or ILD (P = 0.11) between groups. Anti-Ro52 antibodies were more frequently found in the non-Jo-1 group (P = 0.006, ϕ = 0.51). A partial or complete improvement with treatment was seen in three-quarters of the patients. Five patients succumbed to the illness. Better survival was seen in the Jo-1 group (P = 0.05). Conclusion The most typical presenting manifestation of ASS in our cohort was isolated seronegative arthritis. Non-specific interstitial pneumonia was the commonest ILD pattern. Patients with antibodies to Jo-1 had better survival compared with non-Jo-1. The non-Jo-1 aminoacyl-transfer RNA synthetases had a strong association with anti-Ro52 antibodies.

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Section: Methodsmentioning

confidence: 99%

Clinical profile and treatment outcomes in antisynthetase syndrome: a tertiary centre experience

Sreevilasan¹,

Devarasetti²,

Narahari

et al. 2021

Rheumatology Advances in Practice

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“…Of 550 registered patients with IIM (1989–2020), 250 are enrolled into a cohort study (December 2017 to present) at a rheumatology tertiary-care center. [ 9 ] These patients were were contacted by email (sent on 24th March 2020) and the social messaging application, WhatsApp ™ after the implementation of a nationwide lockdown in India on 23 March 2020. In view of travel restrictions, patients were intimated to avail teleconsultation facilities through a previously designated helpline number, on their previously allotted appointment dates.…”

Section: Methodsmentioning

confidence: 99%

“…Challenges encountered and proposed solutions were also recorded. Patient demographics (age, sex, location by pin-code) and socio-economic strata (annual income of the family) were retrieved from database archive [ 9 , 11 , 12 ]. Details on baseline characteristics, such as myositis subtype, and myositis-specific and -associated antibodies (Line immunoassay, Lubeck, Germany), were also obtained from clinical and biorepository archives.…”

Section: Methodsmentioning

confidence: 99%

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Teleconsultation experience with the idiopathic inflammatory myopathies: a prospective observational cohort study during the COVID-19 pandemic

et al. 2020

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Teleconsultation has assumed a central role in the management of chronic and disabling rheumatic diseases, such as the idiopathic inflammatory myopathies (IIM), during COVID-19. However, the feasibility, challenges encountered, and outcomes remain largely unexplored. Here, we describe our teleconsultation experience in a prospectively followed cohort of adult and juvenile IIM. 250 IIM enrolled into the MyoCite cohort (2017-ongoing) were offered the option of audio/visual teleconsultation using WhatsApp during the nationwide lockdown. Clinical outcomes (major/minor relapse) and prescription changes were compared between IIM subsets. Socio-demographic and clinico-serological characteristics of those who sought teleconsultation were compared with those who did not. 151 teleconsultations were sought over a 93 day period by 71 (52.2%) of 136 IIM (median age 38 years, F:M 4.5:1). Nearly one-third (38%) consulted on an emergency basis, with voice consultations being the primary medium of communication. Over a quarter (26.8%) reported relapse (15.5% minor, 11.3% major), these being more common in JDM [71.4%, OR 8.9 (1.5–51)] as compared with adult IIM, but similar across various antibody-based IIM subtypes. Patients who relapsed required more consultations [2(2–3) vs 1(1–2), p 0.009]. The demographic and socioeconomic profile of the patients seeking consultation ( n = 71) was not different from those who did not ( n = 65). Voice-based teleconsultations may be useful to diagnose and manage relapses in IIM during the pandemic. Patient education for meticulous and timely reporting may be improve care, and larger multicentre studies may identify subsets of IIM that require greater care and early tele-triage for effective management of the condition.

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“…Data collection can be improved in collaborative research by syncing surveys to fill out electronic case record forms. 57 58 59 …”

Section: Survey Disseminationmentioning

confidence: 99%

Reporting Survey Based Studies – a Primer for Authors

et al. 2020

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The coronavirus disease 2019 (COVID-19) pandemic has led to a massive rise in survey-based research. The paucity of perspicuous guidelines for conducting surveys may pose a challenge to the conduct of ethical, valid and meticulous research. The aim of this paper is to guide authors aiming to publish in scholarly journals regarding the methods and means to carry out surveys for valid outcomes. The paper outlines the various aspects, from planning, execution and dissemination of surveys followed by the data analysis and choosing target journals. While providing a comprehensive understanding of the scenarios most conducive to carrying out a survey, the role of ethical approval, survey validation and pilot testing, this brief delves deeper into the survey designs, methods of dissemination, the ways to secure and maintain data anonymity, the various analytical approaches, the reporting techniques and the process of choosing the appropriate journal. Further, the authors analyze retracted survey-based studies and the reasons for the same. This review article intends to guide authors to improve the quality of survey-based research by describing the essential tools and means to do the same with the hope to improve the utility of such studies.

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Meeting report: MyoIN – Pan-India collaborative network for myositis research

Cited by 27 publications

References 0 publications

Clinical profile and treatment outcomes in antisynthetase syndrome: a tertiary centre experience

Clinical profile and treatment outcomes in antisynthetase syndrome: a tertiary centre experience

Teleconsultation experience with the idiopathic inflammatory myopathies: a prospective observational cohort study during the COVID-19 pandemic

Reporting Survey Based Studies – a Primer for Authors

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