A survey among industry and other stakeholders was used to investigate the key aspects of rare disease registries to support regulatory decision making.

A set of demographics, clinical and medication-related data were identified that focused primarily on the disease of interest with much less emphasis on co-morbidities or adverse events.

Compared to responders from industry, the other stakeholders found it less relevant to share data with industry and found it less acceptable if the registry is financed by industry.