Rare Disease Stakeholder Perspectives from India

Stakeholder perspectives on rare disease policy in India were collected via semi-structured interviews and news-media analysis. The dataset contains qualitative analysis from an exploratory study conducted by Mohua Chakraborty Choudhury, published in March 2026. It maps stakeholders such as patient organizations, policymakers, and healthcare professionals.

Use Cases

• Analyze stakeholder power and influence levels among policymakers, physicians, and patient organizations.
• Identify engagement gaps by comparing highly engaged stakeholders with low-engagement groups like general healthcare professionals.
• Map stakeholder needs and positions to inform targeted awareness and training programs.

Strengths

• Data is derived from primary sources including semi-structured interviews.
• Explicitly focuses on the rare disease ecosystem in India, a specific and under-researched context.
• Released under a permissive CC-BY-4.0 license for reuse.

Limitations

• Dataset is very small at 5.5 KB, indicating limited quantitative scope.
• Contains qualitative analysis from an exploratory study without conclusive inferences.
• Sample size and specific row count are unknown.

Provenance

Source

Mohua Chakraborty Choudhury via figshare.

Collection Method

Semi-structured interviews and news-media analysis.

Time Range

null

Freshness

Last updated March 2026.

Geography

India