The Indian Council of Medical Research (ICMR) has launched the much-awaited 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 in the sector.
It is the first Indian nationwide dedicated database research network of MS and allied demyelinating disorders. The IMSRN (www.imsrn.icmr.org.in),was started last October, with AIIMS New Delhi as the national coordinating centre and 24 participating centres spread across the country. Multiple Sclerosis is a neurological disorder typically affecting young individuals between the ages of 20 to 40 years, but may also occur in children and adolescents. MS affects the central nervous system, especially the brain, spinal cord, and optic nerves and comes with a wide range of symptoms.
Females are affected more from this disease than males. It is estimated that the MS affects about 20 persons per lakh population and neuro=myelitisoptica spectrum disorders (NMOSD) affects about 2.7 per lakh population although this may be an underestimation. As this disease presents with a gamut of manifestations, most of the patients are either under diagnosed or misdiagnosed. Treatment is case based, depending on the patient and his/her various investigation parameters. Steroids, injectable and oral medications help in controlling the disease, said the doctors.Those present on the occasion were Professor Dr.Subrata Sinha, Dean Academics of AIIMS, Delhi and Dr Satish Chandra, former Director, NIMHANS, Bengaluru. Neurologists from different parts of the country and ICMR officials attended the inauguration.
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 an advancement in the treatment of MS in selective cases.”
Dr. R S Dhaliwal, Head of division of the Non-communicable diseases, ICMR added that as of now, more than 1000 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 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.