Create Your Registry Plan
Overview
Planning ahead is essential to establish clear goals for your registry and a strategy for collecting quality data. In this step you will define specific, detailed, and attainable goals for your registry; define your constraints; plan for roadblocks and identify possible solutions to them; and establish milestones to track your success.
Resources
Set Goals
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)
Frequently Asked Questions - Registries
NIH Clinical Research Trials and You (link)
RARE Webinar: Collaboration Among Foundations
Global Genes (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)
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
Health Research Charities Ireland (link)
Consider Constraints
Video: Institutional Review Boards (IRBs)
U.S. Department of Health and Human Services (HHS) (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)