The Indian Council of Medical Research (ICMR) has set up a National Registry of Multiple Sclerosis (MS) and Indian Multiple Sclerosis and Allied Demyelinating Disorders Registry and Research Network (IMSRN) and it will create an organised system for data collection, storage, retrieval, analysis, management and outcomes.

It is the first Indian nationwide dedicated database research network of MS and allied demyelinating disorders. The IMSRN was started in October 2021, with AIIMS New Delhi as the national coordinating centre and 24 participating centres spread across the country.

"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 newly 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 Balram Bhargava, Secretary, DHR and DG, ICMR, said.

Multiple Sclerosis disease is a neurological disorder typically affecting young individuals between the ages of 20 to 40 years, but may also occur in children and adolescents. Females are affected more by this disease than males.

It is estimated that MS affects about 20 persons per lakh population and neuromyelitis optical spectrum disorders (NMOSD) affects about 2.7 per lakh population although this may be an underestimation.

"As of now, more than 1,000 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.

The Registry will pave the way for bringing experts together to generate ideas and research proposals focused on disease pathophysiology, aetiology and imaging," Dr R S Dhaliwal, Head of the division of the Non-communicable diseases, ICMR said.

The inauguration of the registry was presided over by Professor Dr Subrata Sinha, Dean Academics of AIIMS, New Delhi and Dr Satish Chandra, former Director, NIMHANS, Bengaluru. Neurologists from different parts of the country and ICMR officials attended the inauguration.