Patient Profile and Disease Pattern in the Indian Multiple Sclerosis and Allied Demyelinating Disorders Registry and Research Network (IMSRN)
Rohit Bhatia1, M.V. Padma Srivastava2, Ajay Garg3, Sruthi Nair7, Netravathi M8, Biman Kanti9, Dheeraj Khurana10, A.T. Prabhakar11, Thomas Mathew12, Gagandeep Singh13, S Balasubramanian14, Lekha Pandit16, Samhita Panda17, Anirban Gupta19, Tapas Kumar Banerjee20, Ravouf Asimi21, Debashish Chowdhury23, Ashish Sharma25, Mritunjai Kumar26, Suman Khushwaha28, S. P. Gorthi30, Binod Sarmah32, Manish Mahajan33, Vibor Pardasani34, Alvee Saluja35, Rohit Saxena4, Partha Haldar5, Rajesh Kumar Singh2, Arunmozhimaran Elavarasi2, Divya MR2, Ayush Agarwal6, Soumya Sundaram36, Anita Mahadevan37, Priya Treesa Thomas37, Geeta Desai37, Maya D. Bhat37, Shivaram Varambally37, K. Thennarusu37, Manjunath M.V.37, Shantala Hegde37, Pradeep B.S.37, Vijay Kumawat37, Anupam Gupta37, B.K. Yamini37, Pritam Raja37, Souvik Dubey38, Alak Pandit38, Vivek Lal39, Sanjith Aaron40, G. R. K. Sarma41, Raghunandan Nadig42, Monika Singla43, Tamil Pavai15, Lakshmi Narsimhan15, Suhan Alva44, Anka Arora18, Sarbesh Tiwari18, Taruna Yadav18, Tanu Gupta18, Mithu Banerjee18, Subrat Kumar Nanda19, Adnan Adnan22, Arun Kaul24, Ashutosh Tiwari27, Niraj Kumar Singh27, Rajinder K. Dhamija29, Dulari Gupta31, Anup Bende31, Gourie Devi45, Bhim Singhal46, P. Satishchandra47, Vinod Joseph Abraham48, Denis Xavier49, Girish N. Rao37, Anand Krishnan5, Jeyaraj Pandian50, Meenakshi Sharma51, R. S. Dhaliwal51
1Neurology, All India Institute of Medical Sciences, 2Neurology, 3Neuroradiology, 4Dr Rajendra Prasad Centre for Ophthalmic Sciences, 5Centre for Community Medicine, All India Institute of Medical Sciences, New Delhi, 6All India Institute of Medical Sciences, New Delhi, 7Neurology, Sree Chitra Tirunal Institute for Medical Sciences and Technology, 8Neurology, National Institute of Mental Health and Neuro-Sciences, 9Neurology, Institute of Post Graduate Medical Education & Research, 10Neurology, Postgraduate Institute of Medical Education and Research, 11Neurology, Christian Medical College, 12St.John's Medical College Hospital, 13Neurology, Dyanand Medical College, 14Neurology, Madras Medical College, 15Madras Medical College, 16Neurology, K.S. Hegde Academy of Medical Science, 17Neurology, All India Institute of Medical Sciences, Jodhpur, 18All India Institute of Medical Sciences, Jodhpur, 19Army Research and Referral Hospital, New Delhi, 20Neurology, National Neuroscience Centre, Kolkata, 21Neurology, Shere-E-Kashmir Institute, Kashmir, 22Shere-E-Kashmir Institute, Kashmir, 23Neurology, Govind Ballabh Pant Institute of Postgraduate Medical Education & Research, 24Govind Ballabh Pant Institute of Postgraduate Medical Education & Research, 25Neurology, All India Institute of Medical Sciences, Bilaspur, 26Neurology, All India Institute of Medical Sciences, Rishikesh, 27All India Institute of Medical Sciences, Rishikesh, 28Neurology, Institute of Human Behaviour and Allied Sciences, 29Institute of Human Behaviour and Allied Sciences, 30Neurology, Bharati Vidyapeeth University Medical College and Hospital, Pune, 31Bharati Vidyapeeth University Medical College and Hospital, Pune, 32Neurology, Assam Medical College, Dibrugarh, 33Neurology, Artemis Agrim Neurosciences, 34Neurology, Bombay Hospital & Medical Research Centre, Mumbai, 35Neurology, LHMC NEW DELHI, 36Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum, 37National Institute of Mental Health and Neuro-Sciences, Bangalore, 38Institute of Post Graduate Medical Education & Research, Kolkata, 39Postgraduate Institute of Medical Education and Research, Chandigarh, 40Neurology, Christian Medical College, Vellore, 41St. John's Medical College and Hospital, Bangalore, 42Neurology, St. John's Medical College and Hospital, Bangalore, 43Dayanand Medical College & Hospital, 44K.S. Hegde Medical Academy, 45Sir Ganga Ram Hospital New Delhi, 46Bombay Hospital Institute of Medical Sciences, 47Apollo Hospitals, Bengaluru, 48Morristown Medical Center and Overlook Medical Center, New Jersey, 49St John’s Medical College, Bangalore, 50Christian Medical College, Ludhiana, 51Indian Council of Medical Research, New Delhi
Objective:
To describe the initial observations on disease phenotypes in patients recruited in the IMSRN registry between August 2021-2024.
Background:
IMSRN is the first Indian nationwide database for MS and allied demyelinating disorders. The registry collects longitudinal data on on pre-specified variables among patients presenting to the collaborating centres across the country.
Design/Methods:
The IMSRN is a hospital based registry currently running at 22 tertiary referral institutes situated across India. Details of patients' clinical profile, laboratory, imaging details and follow up are prospectively collected. These are previously described in the published protocol paper.
Results:
A total of 3819 patients have been recruited with multiple sclerosis (1943, 52.16%), NMOSD (618, 16.59%) and MOGAD (498, 13.37%) being the most prevalent. The mean age (SD) of the cohort is 34.28 (12.07) years, age of onset is 30.4 (31.2) years and 65.33 % are females. The median(IQR) duration between onset and formal diagnosis is 88.4 (39.4-198) days and variable across disorders. Majority belonged to an urban background, middle and upper socioeconomic status, were educated above secondary level and married. Most patients lacked addictions. Associated comorbidities were hypertension (7.29%), diabetes mellitus (6.72%), stroke (0.62%), cardiovascular disease (0.62%), asthma (3.77%), epilepsy (2.69%). Family history of hypertension was present in 46.37% and diabetes in 47.63%. Most common symptom of initial presentation in MS and NMOSD was spinal cord and optic nerve in CIS and MOGAD. The median(IQR) number of relapses is 2 (2-4). The median (IQR) value of EDSS is 2 (0-4.5), MFIS is 11(0-30), DASS 21 4(0-12), HAM-A 4 (0-9), HAM-D 4 (0-2), MSQOL 115.7 (62-156) and time to walk 25 feet is 8 sec (5.92-12). The common DMT exposures include dimethyl fumarate, rituximab, azathioprine and mycophenolate across various disorders.
Conclusions:
Data from IMSRN will help understand disease profiles, response to treatment and build various cohorts for long-term understanding and research.
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