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ICMR launches national registry to collect data, conduct research on multiple sclerosis

Multiple sclerosis is a chronic disease affecting the central nervous system (the brain and spinal cord).

MS causes many different symptoms, including vision loss, pain, fatigue and impaired coordination.

The Indian Council of Medical Research (ICMR) Monday launched a National registry of multiple sclerosis (MS) and Indian Multiple Sclerosis and Allied Demyelinating Disorders Registry and Research Network (IMSRN) to create an organised system for data collection, storage, retrieval, analysis, management and outcomes.

Multiple sclerosis is a chronic disease affecting the central nervous system (the brain and spinal cord). It occurs when the immune system attacks the nerve fibres and myelin sheathing (a fatty substance which surrounds/insulates healthy nerve fibres) in the brain and spinal cord.

MS causes many different symptoms, including vision loss, pain, fatigue and impaired coordination. The symptoms, severity and duration can vary from person to person. Some people may be asymptomatic for most of their lives, while others can have severe, chronic symptoms that never go away.

Dr Meenakshi Sharma, Programme Officer of the Registry at ICMR told The Indian Express, said, “This is the first nationwide dedicated database research network of MS and allied demyelinating disorders.”

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More than 1,000 patients have been recruited for the registry. This will help estimate and understand disease burden, disease phenotypes, disease behaviour, drug efficacy, adverse effects, pregnancy outcomes and long-term disease outcomes. The registry will pave the way for bringing experts together to generate ideas and research proposals focused on the disease.

The IMSRN was started in October 2021 with AIIMS New Delhi as the national coordinating centre and 24 participating centres spread across the country. Multiple Sclerosis disease is a neurological disorder typically affecting young individuals between the ages of 20 and 40 years but may also occur in children and adolescents. Females are affected more from this disease than males.

It is estimated that the MS affects about 20 persons per lakh population and neuromyelitis optica spectrum disorders (NMOSD) affects about 2.7 per lakh population although this may be an underestimation, the ICMR said in a statement. According to Mayo Clinic, a non-profit American academic medical centre focused on integrated health care, education, and research, “Neuromyelitis optica (NMO) is a central nervous system disorder that primarily affects the eye nerves (optic neuritis) and the spinal cord (myelitis). NMO is also known as neuromyelitis optica spectrum disorder or Devic’s disease. It occurs when your body’s immune system reacts against its own cells in the central nervous system, mainly in the optic nerves and spinal cord, but sometimes in the brain.”

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In a statement Dr Balram Bhargava, Secretary, DHR and DG, ICMR, said, “There is a 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 the therapies are autologous hematopoietic bone marrow transplantation, which is an advancement in the treatment of MS in selective cases.”

First published on: 12-07-2022 at 16:04 IST
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