Seeking Ideas on Using Common Data Elements for NIH-Supported Clinical Research

Do you have thoughts on how common data elements (CDEs) may be used in NIH-supported clinical research? If so, please share them in response to this recently released Request for Information. CDEs allow for easier exchange of data across different research areas because they are standardized, consistent, interoperable, and defined. They represent one way that NIH implements FAIR (Findable, Accessible, Interoperable, and Reusable) data principles. In addition, as we mentioned in this post from 2021, CDEs help us implement one aim of the NIH Data Science Strategic plan, which is having data resources that maximize the value and rigor of NIH research investment. Identifying the right CDEs can be difficult. This is because data collection methods and models vary between disciplines. Systems may need to be adapted to collect new information. Common vocabulary and definitions must be agreed upon. And researchers need time to find the appropriate CDEs for use in their project. NIH-supported clinical research represents an area where using CDEs may have promise though. Currently, there are no established CDEs for use across all NIH-funded clinical research activities. But if appropriate CDEs are adopted, then our supported clinical research data could be integrated with other healthcare information obtained from electronic health records, coverage claims, and patient-reported outcomes, thereby allowing for new analyses to be performed. With this in mind, we seek your in...
Source: NIH Extramural Nexus - Category: Research Authors: Tags: blog Open Mike common data elements data management Data sharing Request For Information (RFI) Source Type: funding