Develop the Right Questions to Ask

Decide on Demographic Questions

Including demographic (e.g., age, sex, race/ethnicity) questions can help you learn more about the participants in your registry. The goals of your registry will determine whether these questions are optional. A best practice is to follow demographic standards, because this will allow you to compare your results with other data sources. Refer to RaDaR Tool: Standard Contact & Demographic Questions to view sample questions selected using data standards established by the Clinical Data Interchange Standards Consortium (CDISC) and United States Core Data for Interoperability (USCDI) .

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)