June 2017
ICMR launched 'Indian Rare Disease Registry'
The Indian Council of Medical Research (ICMR) has launched "The Indian Rare Disease Registry" to meet the unmet needs of patients with rare diseases and to help the country develop data and information to support research and Development and improve innovation.
The scope of this registry will evolve over time, maturing from an outreach/community-building effort or a means for a basic understanding of patient and disease characteristics, to a supportive mechanism for research funding and attracting health care providers. It intends to comprehensively cover the spectrum of rare and ultra-rare disorders prevalent in the country but initially it shall only gather data of conditions which have an established treatment available in India or globally. With time, many of the other diseases (some without treatment) would also be incorporated.
The benefits of the Registry include monitoring prevalence, incidence & natural history of disease over a period of time towards guiding policy decisions; support research initiatives that aim to better understand the distribution and determinants of rare diseases; facilitating access to innovations in genetics, molecular and computational biology, and other technological advances for patients suffering with rare diseases; and bridge the lack of data on rare disorders in our population thus facilitating access to supportive care for countless individuals suffering from these disorders.
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