Mult Scler Relat Disord. 2024 Jul;87:105627. doi: 10.1016/j.msard.2024.105627. Epub 2024 Apr 14.
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.
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.
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.
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.
中枢神经系统脱髓鞘疾病是一组慢性、炎症性、自身免疫性疾病。为了增进对流行病学、人群特征和疾病行为的了解，建立了一个印度的基于医院的登记处，作为促进合作研究的平台。本文概述了印度多发性硬化症及相关脱髓鞘疾病登记处和研究网络（IMSRN）的发展、治理和现状，这是该国首个此类疾病的科学数据库和专门的专家研究网络。
通过多次审查和利益相关者会议来建立该登记处。IMSRN 于 2021 年 8 月在 26 个三级护理中心正式启动。该登记处由印度医学研究理事会（ICMR）新德里及其工作队委员会管理。在线安全数据库在基线和定期随访时捕获详细的临床和影像患者信息。工作队和合作者定期举行会议，讨论进展、改进和研究建议。
目前，IMSRN 正在积极招募知情同意的患者。截至目前，已有超过 3336 名患者（RIS[N=8]、CIS[N=134]、MS[N=1674]、NMOSD[N=561]、MOGAD[N=404]、ADEM[N=46]、CRION[N=21]、CLIPPERS[N=2]和 GFAP[N=1]）入组。340 名不符合上述任何疾病表型诊断标准的患者归入其他类别。正在制定各种研究提案，以研究这些疾病的不同方面。
建立 IMSRN 的目的是加强我们对多发性硬化症、NMOSD、MOGAD 和其他脱髓鞘疾病的认识。这将有助于回答与印度患者疾病特征和长期结局相关的重要问题。从临床实践、治疗、患者管理、研究和国家政策制定的角度来看，IMSRN 将作为一个协同平台，弥合上述领域的差距，并通过国家和国际合作指导未来的研究。
