Response to Request for Information (RFI): Use of Common Data Elements (CDEs) in NIH-funded research: NOT-LM-21-005

NIH requested public comment on the use of CDEs, particularly in the context of COVID-19 research, including opportunities for advancing research with CDEs, challenges to adopting CDEs, and guidance or tools that could facilitate use of CDEs. Here, members of the NCI funded Center for Cancer Data Harmonization, the Pediatric Data Commons, the NCATS funded Center for Data to Health, describe our extensive use of CDEs for prospective studies and data harmonization efforts. We participate in many SDOs such as HL7, ISO, CDISC, GA4GH, WHO, etc. and try to promote computational encoding and use of CDEs in these contexts.