Year : 2019 | Volume
: 14 | Issue : 2 | Page : 136--142
Meeting report: MyoIN – Pan-India collaborative network for myositis research
Latika Gupta1, Sravan Kumar Appani2, Ramya Janardana3, Hafis Muhammed1, Able Lawrence1, Sanjiv Amin4, Vineeta Shobha3, Liza Rajasekhar2, Ramnath Misra1,
1 Department of Clinical Immunology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, Uttar Pradesh, India
2 Department of Rheumatology, Nizam's Institute of Medical Sciences, Hyderabad, Telangana, India
3 Department of Clinical Immunology and Rheumatology, St John's Hospital, Bengaluru, Karnataka, India
4 Consultant Rheumatologist, Mumbai, Maharashtra, India
Dr. Latika Gupta
Department of Clinical Immunology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow - 226 014, Uttar Pradesh
Rheumatology in India, albeit old, has lagged behind in research on epidemiology and outcomes of chronic rheumatic diseases. The realization about paucity of Indian data has created the felt need for cohort-building and sustainable research. With this comes the dawn of collaborative research. Myositis is one such rare disease with considerable morbidity and mortality, where little is known about the behavior of the disease and treatment practices in the Indian setting. In recent years with the availability of myositis-specific autoantibodies, newer clinic-serologic associations have been described. Collaborative efforts in rare diseases from the Western world have yielded exemplary results. Hence, a pan-India collaborative network called MyoIN (Myositis India Collaborative Effort) was formed to collect data on patients with inflammatory myositis in a standardized format including clinical and investigational parameters both at presentation and follow up to build up a large series prospectively. This report describes the activities since the inception of this group.
|How to cite this article:|
Gupta L, Appani SK, Janardana R, Muhammed H, Lawrence A, Amin S, Shobha V, Rajasekhar L, Misra R. Meeting report: MyoIN – Pan-India collaborative network for myositis research.Indian J Rheumatol 2019;14:136-142
|How to cite this URL:|
Gupta L, Appani SK, Janardana R, Muhammed H, Lawrence A, Amin S, Shobha V, Rajasekhar L, Misra R. Meeting report: MyoIN – Pan-India collaborative network for myositis research. Indian J Rheumatol [serial online] 2019 [cited 2020 Feb 23 ];14:136-142
Available from: http://www.indianjrheumatol.com/text.asp?2019/14/2/136/262350
There is a paucity of data on epidemiology, clinical and serological profile, treatment practices, and outcome of Indian myositis patients. Myositis being a heterogeneous disease with a complex interplay of genetic and environment factors varies in presentation and behavior across countries. Socioeconomic and cultural aspects also emerge as major players in decision-making in the clinic when it comes to the management of this challenging disease in this part of the world. Knowledge on clinical profile, behavior of the disease, and prescription trends in Indian patients can go a long way to streamline and improvise management, as well as shape up future research. There was thus a felt need for the establishment of a Pan-India collaborative network for collecting data on this rare disease. The conduct of the Indian National Conference of Rheumatology (IRACON) under the banner of the Indian Rheumatology Association (IRA) brought alongside the opportunity to embark on such an initiative. The IRACON 2016 in Kochi saw the presence of stalwarts in myositis research from overseas, Professor Ingrid Lundberg and Dr. Kenneboyina Nagaraju. Amidst talks by them, the first Myositis Special Interest Group (SIG) was held at Kochi. The planning for such a collaborative effort was underway then, which took better shape at the next IRACON 2017 held at Sanjay Gandhi Postgraduate Institute, Lucknow. Rheumatologists catering to adults and children were invited to be the part of SIG in myositis through IRA. The primary aim was to develop a consensus protocol for data collection across the country, ensuring uniformity in content and clarity of methods.
The second meeting, held in Lucknow, attracted 49 attendees which included academicians and private practitioners of adult and childhood rheumatology alike from across the country and few from outside the country. The meeting was presided by Dr. Liza Rajasekhar, and the new scoring and classification criteria were discussed. Five case summaries were precirculated for scoring using the new ACR/EULAR Classification Criteria. These cases included one comparator case of metabolic myopathy. Differences in scoring were discussed in an effort to achieve consistency. Issues with variability in scoring were discussed. Based on the above deliberation, it was decided to form a common case record form (CRF) and collate baseline data across centers. Meeting also featured a short video presentation of manual muscle testing-8 scoring. A discussion followed video presentation so that uniformity in grading and scoring could be achieved.
The merits of good research lie in uniformity in the scoring of outcome measures. The International Myositis Assessment and Clinical Studies Group (IMACS) 1 committee has been instrumental in devising such methods in the past. Moreover, this very aspect was tested before embarking on the initiative by mailing cases as Google forms to a set of practicing rheumatologists interested in the disease. This was done with the objectives of exploring common knowledge about outcome measures in inflammatory myositis. The lack of such uniformity and the need to bring in the same was brought out by this exercise, which was later dwelt on by Dr. Latika Gupta in the discussion on the scope of various IMACS outcome measures. A discussion regarding points of contention in classification scoring and IMACS outcome measures followed. Myositis pro forma currently used by various centers were also discussed and ideas for the development of a common CRF was exchanged. This was followed by a 10 min talk by Dr. Varaprasad on the development of a consensus treatment protocol for IIM in India. Members of the meeting then discussed on potential additional participants to SIG and were decided to invite them.
It was decided to invite academic and practice centers to be part of the same. Six centers across the country have opted for participation into the same. Professor Ramnath Misra was chosen as the chairperson for 2 years by consensus. The name MyoIN was decided for collaboration. The MyoIN consortium was established with the prime intent of developing a registry of Indian patients with inflammatory myositis. Data on prevalent treatment practices and outcomes would be captured. Identification of poor prognostic markers could be useful for better management of cases. The ground would also be set for sample collection and characterizing genotype and biomarker research.
A CRF was formulated. Outcome measures were included in the CRF. The first CRF was rolled out on December 31, 2017, and tested on 25 cases at each center. A Skype meeting was done to resolve the first round of queries. Following this, the form underwent more than 10 rounds of correction. The overlap form was designed on January 8, 2018. Subsequently, follow-up data sheet was formulated. A separate form was devised for patient with juvenile dermatomyositis (JDM) to factor in inclusions from the JDM optimal data set [https://www.researchgate.net/publication/333918126_Meeting_Report_MyoIN_-_Pan-India_collaborative_network_for_myositis_research]. A consensus on the changes suggested was reached on February 15, 2018, and the CRF locked and circulated for use. A glossary explaining the various items in the CRF was devised for the comfort of the unaware user. Efforts for ethics clearance for collaborative effort and database structure were initiated.
As of December 2018, six centers have started collating data with ethical committee clearance. As part of MyoIN collaborative effort, two abstracts were presented at IRACON 2018. Efforts for biobanking sera have been initiated, with SGPGI as the apex laboratory for processing of these sera. Dr. Rajasekhar has been instrumental in devising a database for collecting information on the registry, which has primarily been put to use in compilation of data.
A Pan-India collaborative network called MyoIN was formulated with six centers across the country for uniformity in methods of clinical research. This is one of the first steps in successful collaboration through SIG across academician and practitioners of rheumatology in India. Uniformity in data collection methods hope to provide a model for sustainable clinical research.
Collaborative efforts with other international groups should help in filling the research gaps in this area.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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