Develop the Right Questions to Ask
Create Questions About Diagnosis
Consider what questions on diagnosis you need to include to verify that a participant meets requirements to join your registry. To avoid, “survey fatigue” and overwhelming the person answering the questions, it is important to be mindful about the number of questions included in this section. Be selective in the questions you include.
- How was the patient diagnosed? (Consider providing answer options (e.g., clinical evaluation, laboratory tests, imaging tests, or diagnostic procedures))
- At what age was the patient diagnosed?
- What is the name of the clinician who diagnosed the patient?
- What is the medical specialty of the clinician who made the diagnosis?
- What was the diagnosis?
- Name of medical center, practice, or hospital where patient was diagnosed.
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
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)