The Indian Council of Medical Research (ICMR) has established a National Registry of Multiple Sclerosis (MS) and the Indian Multiple Sclerosis and Allied Demyelinating Disorders Registry and Research Network (IMSRN), which will create a systematic system for data collection, storage, retrieval, analysis, management, and outcomes.
It is India’s first countrywide database research network dedicated to MS and related demyelinating illnesses. The IMSRN began in October 2021, with AIIMS New Delhi serving as the national coordinating centre and 24 participant centres located around the country.
“There is a critical need to get an understanding of our patients’ illness profiles and outcomes, as well as to plan research in many domains of pathophysiology, aetiology, therapy, and rehabilitation on these disorders. There are recently licenced drugs known as “disease-modifying treatments” that have been shown to be beneficial, including autologous hematopoietic bone marrow transplantation in the treatment of MS in certain instances “Dr. Balram Bhargava, Secretary of DHR and Director General of ICMR, said.
Multiple Sclerosis illness is a neurological ailment that mainly affects young people between the ages of 20 and 40, although it can also affect children and adolescents. This condition affects females more than males.
MS is expected to impact around 20 people per lakh population, while neuromyelitis optical spectrum disorders (NMOSD) affect approximately 2.7 people per lakh population, albeit this may be an understatement.
“More than 1,000 patients have already been recruited for this register. This will aid in estimating and comprehending our patients’ illness load, disease phenotypes, disease behaviour, treatment effectiveness, side effects, pregnancy outcomes, and long-term disease outcomes. The Registry will open the road for specialists to collaborate and produce ideas and research proposals on disease pathophysiology, aetiology, and imaging “Dr. R S Dhaliwal, ICMR’s Head of the Division of Noncommunicable Diseases, stated.
The registry was inaugurated by Professor Dr Subrata Sinha, Dean Academics of AIIMS, New Delhi, and Dr Satish Chandra, former Director of NIMHANS, Bengaluru. The ceremony was attended by neurologists from throughout the country as well as ICMR executives.