ICMR National Registry for Rare and other Inherited disorders (NRROID) was initiated in November 2019 in collaboration with AIIMS, New Delhi to collect useful data on demography, phenotype, natural history, evolution and outcomes of specific diseases with/ without treatment.
Other objectives of the registry are to support research on genetic, molecular and physiological basis of rare disease, to establish a patient base for evaluating drugs, medical devices, and orphan products and to connect affected patient’s families, and clinicians.
The disorders on which data is being collected have been broadly classified under six categories viz.
Lysosomal storage disease, Inborn errors of metabolism, skeletal dysplasias, haematological disorders, primary immune deficiency, neuromuscular disorders.
19 centres from all over the country are contributing to the registry at present. Data on over 4000 cases of Rare diseases has been collected till date under the registry.