Policy
Building national registries: lessons from India's rare disease policy
India's national rare disease framework created momentum. The next challenge is turning policy intent into registries that clinicians, researchers, and public health teams can actually use.
National policy creates the mandate. Implementation creates the infrastructure. Across states, rare disease programs are discovering that registries only work when they align with how clinicians already document and follow patients.
Successful registry design starts with minimum viable fields that map to real workflows: diagnosis status, phenotype capture, genomic test availability, treatment access, and longitudinal outcomes. Complexity can be layered in later.
Interoperability matters. Registries that cannot exchange data with hospital systems become parallel burdens. The most durable models treat the registry as a structured view on clinical activity rather than a separate reporting exercise.
Public health teams gain the most when registries support burden estimation, center-of-excellence planning, and therapy access tracking. Researchers benefit when de-identified cohorts can be derived without manual curation.
India's opportunity is to leapfrog fragmented pilots with shared standards and institution-ready tooling. Policy opened the door; registry infrastructure will determine how quickly patients see the benefit.