Create Your Registry Plan

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)

Resources