Primer for Specialty Societies and Organizations Developing and Advancing Clinical Data Registries
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Pdf Summary
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Includes the following sections:

Overview and Purpose
Background on Clinical Registries and Patient Engagement
Key Concepts in Patient Engagement
Themes and Best Practices
Helpful Resources
Keywords
patient engagement
clinical registries
healthcare data
patient voice
treatment information
patient-centered outcomes
patient-reported outcomes
medical societies
patient organizations
collaboration
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