Rare Disease Special Interest Group
To provide an interactive and collaborative forum to discuss, develop and improve the use of epidemiological approaches for rare disease research.
- To create a central data repository for definitions and regulatory environments for rare disease therapeutic products
- To identify epidemiological approaches for natural history of rare diseases and safety and long-term outcomes of therapeutic products that treat rare diseases
- To identify existing data sources and professional and research networks that may be considered for rare disease research
- To identify issues unique to rare disease pharmacoepidemiology, and to explore methodological approaches to address these issues
- To serve as a resource to the ISPE membership by providing expertise in rare disease pharmacoepidemiology and educational content in the area
Monthly teleconferences and face-to-face meetings during ISPE mid-year and annual meetings
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