Patient Registry Best Practice Guidelines

Below is a collection of six patient registry “Best Practice Guidelines” PDF documents for your reference; you can click on the image or the text description to view the PDF.

Best Practices Patient Outcomes
Registries for Evaluating Patient Outcomes: A User’s Guide
Community Forum White Paper
Engaging Patients in Information Sharing and Data Collection: The Role of Patient-Powered Registries and Research Networks


Best Practices Patient Registries
EURORDIS Policy Fact Sheet: Rare Disease Patient Registries
Best Practices Smarter Registries
Faster Cures: Building Smarter Patient Registries


Best Practices Common Issues
Rare Diseases: Common Issues in Drug Development
Best Practices Rare Disease Task Force
Rare Disease Task Force: Patient Registries in the Field of Rare Diseases


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