Supporting the Rare Disease Community in India
It is estimated that 70 Million rare disease patients live in India. However, there is scant epidemiological data about the extent and number of cases. This lack of information has led to difficulties in research and development, making correct and timely diagnosis and understanding the pathogenicity of variants specific to the Indian population. About 80% of rare diseases have a genetic origin.
Innovations in genetics and molecular technologies have led to a rapid decline in costs and diagnosis of these disorders has become routine in Indian hospitals and clinics. However, there is no infrastructure for easily and securely sharing information between the different academic institutes and healthcare providers in India.
The need of the hour is a systematic collection of clinical, genetic and biologic information in the form of longitudinal patient registries and data sources.
Qlinics is creating a cloud-based platform that can be used by geneticists, clinician and even patient groups to securely create, store and access patient registry data. The platform will be free-to-use and it is hoped that it can fill the enormous gaps in the critical cooperation infrastructure needed to further the management of rare diseases.