Create Your Registry Plan
Draft a timeline for achieving registry milestones and for staying motivated. The timeline may change, but it will help you track your progress. For example:
- Registry will be set up and ready to collect information by [Date].
- Complete first recruitment push within [#] months.
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 Article in Nature: Scientific Data (link)
Rare disease registries: potential applications towards impact on development of new drug treatments 2018 Article in 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 (WFH) (link)
2013 Policy Fact Sheet - Rare Disease Patient Registries EURORDIS Rare Diseases Europe (link)
Develop a Governance Plan
Recommendations for Improving the Quality of Rare Disease Registries 2018 Published Article
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)