The National Institute of Nursing Research (NINR) encourages the use of common data elements (CDEs) to facilitate broader and more effective use of data. CDEs are data elements that have been identified and defined for use in multiple data sets across different studies. Use of CDEs can facilitate data sharing and standardization to improve data quality and enable data integration from multiple studies and sources, including electronic health records.
A broader CDE initiative is underway at the NIH with the purpose of standardizing the collection of data in order to facilitate comparison of results across studies and more effectively aggregate information into significant metadata results. The NINR, part of the National Institutes of Health (NIH), is a leading supporter of clinical studies in symptom science and self-management research.
To harmonize data collected from clinical studies, NINR is spearheading an effort to develop CDEs in nursing science. NINR developed a CDE Working Group to develop data standards within the symptom science and self-management research community. The goals of the NINR CDE Working Group are to increase the efficiency and effectiveness of clinical research studies and clinical treatment, increase data quality, and facilitate data sharing.
The NINR CDEs were developed by the NINR CDE Working Group identified data elements that were common across P20 and P30 research centers focused on symptom science and self management science. The NINR CDE Working Group included representatives from NINR Extramural Program staff and NINR-supported P20 and P30 Centers who initially reviewed and through a consensus process agreed on an initial set of CDEs for symptoms. The core data elements to be considered by an investigator are listed online at: https://cde.nlm.nih.gov/form/search?selectedOrg=NINR.
NIH has identified CDEs for many clinical domains (e.g., neurological disease), types of studies (e.g. genome-wide association studies or GWAS), types of outcomes (e.g., patient-reported outcomes), and patient registries (e.g., the Global Rare Diseases Patient Registry and Data Repository). NINR shares in this trans-NIH mission of developing data standards for clinical research.
NIH has established a “Common Data Element (CDE) Resource Portal" (http://cde.nih.gov/) to assist investigators in identifying NIH-supported CDEs when developing protocols, case report forms, and other instruments for data collection. The Portal provides guidance about and access to NIH-supported CDE initiatives and other tools and resources in NIH-funded research. Investigators are encouraged to consult the Portal and describe in their applications any use they will make of NIH-supported CDEs in their projects.