Create Your Registry Plan

Resources

Resources

RaDaR Tool: Registry_Plan_Template (.pdf, 131 KB)

RaDaR

Frequently Asked Questions (FAQs) - Registries NIH Clinical Research Trials and You (link)
PCORI Training: A Program for Rare Disease Patient Advocates Patient-Centered Outcomes Research Institute (PCORI) (link)
Registries Tool Kit TREAT-NMD Neuromuscular Network (link)
Developing a Patient Registry: A Practical Guide Medical Research Charities Group (link)
Video: Institutional Review Boards (IRBs) U.S. Department of Health and Human Services (link)
Recommendations for Improving the Quality of Rare Disease Registries International Journal of Environmental Research and Public Health