Background: Demyelinating disorders of the CNS are a set of chronic, inflammatory, autoimmune conditions. To improve understanding of epidemiology, population characteristics and disease behaviour, an Indian, hospital-based registry has been established to serve as a platform for fostering collaborative research. The following article outlines the development, governance and current status of the Indian Multiple Sclerosis and Allied Demyelinating Disorders Registry and Research Network (IMSRN), the country's first scientific database and dedicated expert research network of these disorders.
Methods: Multiple reviews and stakeholder meetings were held to set up the registry. The IMSRN was formally initiated in August 2021 across 26 tertiary care centres. The registry is governed by the Indian Council of Medical Research (ICMR), New Delhi and its task force committee. The online secure database captures detailed clinical and imaging patient details at baseline and periodic follow up. Periodic meetings of the task force and collaborators are held to discuss the progress, improvements and research proposals.
Results: The IMSRN is currently active and recruiting patients following an informed consent. As of current, more than 3336 patients including RIS (N = 8), CIS (N = 134), MS (N = 1674), NMOSD (N= 561), MOGAD (N = 404), ADEM (N = 46), CRION (N = 21), CLIPPERS (N = 2), and GFAP (N =1) have been enrolled. 340 patients, not meeting the diagnostic criteria for any of the aforementioned disease phenotypes are in the others category. Various research proposals are being developed to study different aspects of these disorders.
Conclusion: The IMSRN has been established with a vision to strengthen our understanding about MS, NMOSD, MOGAD, and other demyelinating disorders. This would help answer important questions related to disease profiles and long-term outcomes of patients in the Indian setting. From the standpoint of clinical practice, therapeutics, patient management, research, and national policy building, IMSRN shall serve as a synergising platform for bridging the gap in the aforementioned areas and guiding future research through national and international collaboration.
Keywords: CNS demyelination; Indian MS registry; MOGAD; Multiple sclerosis; NMOSD; Registry.
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