The Indian Council of Medical Research (ICMR) has launched ‘The Indian Rare Disease Registry’ which is aimed towards addressing the unmet needs of patients with rare diseases and also helping the country develop data and information to support research & development and enhance innovation.
The Registry is an effort to give Indians who are suffering from any form of a rare disease a chance to be visible and would initially be hospital based or physician doctor based. A disease or disorder is defined rare in India when it affects fewer than 1 in 2,500 individuals.
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 Registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purposes.
The registry will seek to benefit for the patients as they will be identified and therefore would have increased possibility of access to treatment depending upon the inclusion criteria. For the government, it will know exactly the number of patients and therefore provide resources to help address the patients’ needs. For research bodies, the registry will be a source of plethora of information which will be made available for research and development activities to flourish in India. For publications, the data would form the basis of several publications thereby strengthening the country’s stand as a global leader in healthcare and for clinical trials, the patients and local R&D would also benefit.
Other major 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.