An attempt has been made by ICMR to create a registry of all rare and inherited disorders in India. It is being currently expanded to include other inherited conditions with an aim to find your true prevalence.
Objectives:
Primary:
• To establish an Indian registry for rare genetic disorders for the assessment of the
burden and to integrate their care through the available new and existing public
health programs and policies to achieve “health for all”
• To collect demographic and phenotypic data for selected rare genetic disorders
(Laboratory & clinical)
• To learn the natural history, evolution, and outcomes of specific diseases
with/without treatment
Secondary
• To support research on genetic, molecular, and physiological basis of rare diseases
• To establish a patient base for evaluating drugs, medical devices, and orphan
products
• To connect affected patients, families, and clinicians