Indian Council of Medical Research Launches National Registry for Multiple Sclerosis and Allied Demyelinating Disorders
ICMR establishes the first-ever dedicated database research network for MS and allied demyelinating disorders
New Delhi, India – The Indian Council of Medical Research (ICMR) announced the establishment of a national registry for multiple sclerosis (MS) and allied demyelinating disorders. This groundbreaking initiative, the first of its kind in India, aims to create a dedicated database research network that will revolutionize the understanding and treatment of these neurological conditions.
The newly launched Indian Multiple Sclerosis and Allied Demyelinating Disorders Registry and Research Network (IMSRN) will serve as an organized system for the collection, storage, retrieval, analysis, and management of data related to MS and allied demyelinating disorders. The registry, which started in October 2021, operates under the national coordinating center at the All India Institute of Medical Sciences (AIIMS) in New Delhi, in collaboration with 24 participating centers across the country.
MS is a neurological disorder that primarily affects individuals between the ages of 20 and 40, although it can also occur in children and adolescents. Females are more commonly affected by this disease than males. It is estimated that MS affects approximately 20 persons per lakh population, while neuromyelitisoptica spectrum disorders (NMOSD) affect around 2.7 per lakh population, although these figures may be conservative.
The registry aims to organize data collection, analysis, and management for improved outcomes
The inauguration of the registry was attended by prominent neurologists from various parts of the country, along with officials from the ICMR. The event was presided over by Professor Dr. Subrata Sinha, Dean of Academics at AIIMS, New Delhi, and Dr. Satish Chandra, former Director of the National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru.
Dr. Balram Bhargava, Secretary of the Department of Health Research (DHR) and Director-General of the ICMR, emphasized the need to gain insights into the disease profile and outcomes of patients, as well as to plan research in the domains of pathophysiology, causation, management, and rehabilitation. He highlighted the effectiveness of new approved medications, including “disease modifying therapies,” and the advancements made in the treatment of MS, such as autologous hematopoietic bone marrow transplantation.
Key stakeholders and experts come together to inaugurate the groundbreaking registry
Dr. R.S. Dhaliwal, Head of the Division of Non-Communicable Diseases at the ICMR, added that the registry has already recruited more than 1000 patients, which will greatly contribute to estimating the disease burden, understanding disease phenotypes and behavior, assessing drug efficacy, evaluating adverse effects, monitoring pregnancy outcomes, and determining long-term disease outcomes.
The establishment of the registry is expected to foster collaboration among experts in the field, enabling the generation of ideas and research proposals focused on disease pathophysiology, etiology, and imaging. This landmark initiative by the ICMR will undoubtedly accelerate advancements in the diagnosis, treatment, and overall management of MS and allied demyelinating disorders, benefiting patients across India and beyond.
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