About Dr. Danielle Boyce
Dr. Danielle Boyce is the creator of this course and a leader in participant led research infrastructure. This course draws on her direct experience helping advocacy organizations build registries that generate research-grade data and support drug development for rare diseases.
About this course
Patient Registries 101 is a practical guide for advocacy groups building or improving disease registries. It covers the full lifecycle, from defining purpose and establishing governance, through data architecture and collection, to analysis, data sharing, and publication.
The course is designed for:
- Advocacy organizations planning their first registry
- Organizations with an existing registry looking to improve data quality or expand capabilities
- Registry staff and volunteers who want to understand the broader context of their work
- Scientific advisory board members new to participant led registries
What this course is and isn't
This course is:
- A practical, operational guide grounded in real world registry experience
- A source of frameworks, checklists, and questions to guide decisions
- A curated resource library pointing to the most important standards and tools
This course is not:
- Legal or regulatory advice, consult qualified legal and regulatory professionals for your specific situation
- A substitute for expert statistical or bioinformatics consultation
- Comprehensive for every disease or registry context, adapt guidance to your specific situation