Create Your Registry Plan
Resources
Resources
Section I: Creating Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition
Agency for Healthcare Research Quality (AHRQ) (link)
The FAIR Guiding Principles for scientific data management and stewardship
2016 Published Article in Nature: Scientific Data (link)
RaDaR Tool: Registry_Plan_Template
(.pdf, 131 KB)
RaDaR
Frequently Asked Questions (FAQs) - Registries
NIH Clinical Research Trials and You (link)
RARE Webinar: Collaboration Among Foundations
Global Genes (link)
Rare Disease Registry: Potential Applications Toward Impact on Development of New Drug Treatments
Orphanet Journal of Rare Diseases (link)
Rare Toolkit: Rare Disease Registries: Advancing Disease Understanding, Treatments, and Cures
Global Genes (link)
PCORI Training: A Program for Rare Disease Patient Advocates
Patient-Centered Outcomes Research Institute (PCORI) (link)
World Federation of Hemophilia Guide to Developing a National Patient Registry
World Federation of Hemophilia (link)
Registries Tool Kit
TREAT-NMD Neuromuscular Network (link)
2013 Policy Fact Sheet - Rare Disease Patient Registries
EURORDIS Rare Diseases Europe (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
Section II: Legal and Ethical Considerations for Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition
Agency for Healthcare Research Quality (AHRQ) (link)