This library holds … variables gathered from published rare disease registries and platform data dictionaries, with this registry's harmonized core broken out into the original sources each field was drawn from: GenomeConnect, NAACCR, NCI caDSR and PRO-CTCAE, All of Us, I-CAM-Q, and NHANES/ODS. Each entry shows exactly how the question was asked, what response options were used, and which standards it connects to: HPO codes, FHIR resources, validated instruments, and common data element crosswalks, with a link to the source. Search a topic, compare how different registries ask the same thing, then add the versions you want to your own dictionary and download it in REDCap format. Writing a brand-new question is always possible here too, but the strongest registries borrow: an existing standardized question means your data can be compared with everyone else's.
Before drafting new questions, see whether one of these already defines the concept.
Each chip runs a search so you can compare how the sources ask about it.
Nothing added yet. Use the Add button on any variable.
Search first: if a standardized version exists above, using it makes your registry comparable with others. When your question truly is new, add it here and it exports alongside the rest.
Counts are variables in this library from each source. Citations link to the publication or platform each set was drawn from; a snapshot compiled 2026-09-02 from the versions named below.