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White Paper

Before You Build the Registry: A Strategic Readiness Guide for Patient Led Evidence Generation

Before You Build the Registry: A Strategic Readiness Guide for Patient Led Evidence Generation

Before You Build the Registry: A Strategic Readiness Guide for Patient Led Evidence Generation

IQVIA
Pages 20 Pages

This white paper provides patient advocacy organizations with a practical framework for planning sustainable registries and other patient-led evidence initiatives before selecting technology or vendors. It explains that many projects fail because organizations begin with broad ambitions but lack clear research questions, leadership alignment, governance, feasibility testing, or long-term funding. The guide organizes readiness into six decision gates: confirming the need, defining goals and use cases, assessing feasibility, establishing a sustainable business model, designing governance and operations, and selecting suitable technology and partners.

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