Develop the Right Questions to Ask

Overview

Decide which questions to include in your registry and how the answers will be formatted. Data are most useful if they have been collected in a standardized way (that is, everyone is asked the same questions and answers are provided in the same format). Choose an established data standard for collecting patient information for your registry.

Resources

Collect Patient Information

Chapter 5: Data Elements for Registries in Registries for Evaluating Patient Outcomes: A User’s Guide, [internet]. 4th Edition Agency for Healthcare Research Quality (AHRQ) (link)

Decide on Demographic Questions

RaDaR Tool: Sample Contact & Demographic Questions RaDaR

Document Permissions to Use Data

Rare Toolkit: Informed Consent - Important for Treatment Decisions and Advancing Research Global Genes (link)

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)