Abstract

Scope of patient registries for rare diseases in India

Rare diseases are difficult to treat and research upon and signify a global medical concern. There have been crucial advances in research and funding on rare diseases in several countries. The challenge is immense for India because of its large population and the extensive geographical territory, hence it is essential to understand the natural history and long term treatment outcomes associated with these diseases to tackle the challenges on related research and reforms on a global scale. Patient registry is one of the viable and robust tools to achieve these objectives.

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