Data Standards: Making Cancer Research Data Work Together

Imagine trying to combine results from multiple cancer studies where one calls a treatment response "complete remission," another uses "no evidence of disease," and a third records "CR." Without common standards, researchers waste countless hours trying to figure out if these terms mean the same thing and might miss important patterns in the data entirely. NCI's data standards solve this problem by providing a common language and structure for cancer research data.

Two interconnected systems work together to standardize how cancer researchers describe, collect, and share data.

Vocabulary Services: The Common Language

Through NCI’s Enterprise Vocabulary Services (EVS), we provide the standardized "dictionary" that ensures everyone uses the same terms with the same meanings. This comprehensive vocabulary system includes:

• controlled terminologies and ontologies that define precise meanings for cancer-related concepts, from basic disease classifications to complex molecular characteristics.
• cross-terminology mappings that connect different vocabulary systems, allowing researchers to translate between different standards (like connecting cancer staging systems used in different countries).
• specialized value sets developed in partnership with organizations like the FDA and international standards groups, ensuring compatibility across research and regulatory environments.

EVS maintains over 208,600 standardized concepts covering everything from cancer types and treatments to laboratory procedures and patient demographics, with regular updates to reflect advances in cancer science.

Data Element Services: The Data Specification

Through the cancer Data Standards Registry and Repository (caDSR), we provide the common structure and data specifications through common data elements (CDEs) and other resources that collect and organize research data via common vocabularies.

CDEs specify the meaning and representational characteristics for data. They are rules for how data should be collected, formatted, stored and interpreted. CDEs standardize field labels or, in the case of forms, question text along with standardized answer formats. Using the same CDEs across research groups and clinical trials ensures that data collection is consistent and interoperable. For example, if one study asks, "What was the patient's tumor grade?" and another study phrases the question differently, CDEs ensure both studies collect responses in the same format. Even if researchers do not collect identical responses, when both studies use CDEs, humans and machines can map and aggregate data through standardized structure and vocabularies.

Through the caDSR, you can find:

• CDEs required for all NCI-funded clinical trials.
• ready-to-use forms and templates that you can download and use directly in systems like REDCap and Medidata Rave (you don’t need to create the forms from scratch).
• data models linked to CDE data standards to define you should structure and store information to make combining data from multiple studies easier.

The caDSR currently hosts thousands of CDEs and forms with many additional resources available for other types of clinical research.

These standards enable researchers to spend less time on data management and more time on scientific discovery. They make it possible to rapidly combine data from multiple studies for larger analyses, accelerate clinical trial startup, and ensure that research findings can contribute to the broader scientific knowledge base. By providing both the vocabulary and the structure for consistent data collection, NCI's data standards are essential infrastructure supporting collaborative cancer research worldwide.

• Vocabulary Services for Cancer Research: Explore EVS terminologies, ontologies, and cross-terminology mappings.
• Data Element Services for Cancer Research: Discover CDEs, caDSR tools, and standardized data collection resources.