Rare Disease SIG

Established April 2017

Mission Statement

To provide an interactive and collaborative forum to discuss, develop and improve the use of epidemiological approaches for rare disease research.

Objectives

• 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

Meeting Schedule

Monthly teleconferences and face-to-face meetings during ISPE mid-year and annual meetings

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SIG leader(s)