The Indian Council of Medical Research (ICMR) has set up a national registry of multiple sclerosis and allied demyelinating disorders, an official statement said on Monday.
It is the first Indian, nationwide and dedicated database research network of MS and allied demyelinating disorders, the apex health research institute said in the statement.
The registry will create an organized system for data collection, storage, retrieval, analysis, management and outcomes.
The Indian Multiple Sclerosis and Allied Demyelinating Disorders Registry and Research Network (IMSRN) – www.imsrn.icmr.org.in was started in October 2021, with AIIMS, New Delhi, as the national coordinating centre and 24 participating centres spread across the country, the statement said.
Multiple sclerosis disease is a neurological disorder typically affecting young individuals between the age of 20 to 40 years, but may also occur in children and adolescents.
Females are affected more from this disease than males. It is estimated that MS affects about 20 persons per lakh populations and neuromyelitisoptica spectrum disorders (NMOSD) affects about 2.7 per lakh population although this may be an underestimation, the statement said.
The inauguration of the registry was presided over by Professor Dr Subrata Sinha, Dean, Academics, AIIMS, New Delhi and Dr Satish Chandra, former Director, NIMHANS, Bengaluru. Neurologists from different parts of the country and ICMR official attended the inauguration ceremony.
Dr Balram Bhargava, secretary, DHR and DG, ICMR, said, “There is a major need to get an insight into disease profile and outcomes of our patients as well as plan research in various domains of pathophysiology, causation, management and rehabilitation on these disorders. There are new approved medications called ‘disease modifying therapies’ which are seen to be effective, among them autologous hematopoietic bone marrow transplantation is advancement in the treatment of MS in selective cases.” Dr R S Dhaliwal, head of division of the non-communicable diseases at ICMR added that as of now, more than 1000 patients have been recruited for this registry. This will help estimate and understand disease burden, disease phenotypes, disease behaviour, drug efficacy, adverse effects, pregnancy outcomes, and long-term disease outcomes of our patients, he said.
The Registry will pave the way for bringing experts together to generate ideas and research proposals focused on disease pathophysiology, aetiology and imaging, he said.