Common Data Elements

Common Data Elements (CDEs) can be used to standardize data collection and facilitate the comparison and aggregation of results across research studies. Using NBSTRN CDEs and their associated tools will allow individuals to reduce the time needed to develop datasets, promote consistent data collection, improve data quality, and facilitate data sharing.

A general set of CDEs applicable to RUSP conditions were first developed by the Joint Committee for use in public health and research. NBSTRN Workgroups and Grantees next developed a set of CDEs tailored to research involving specific conditions and/or study design. In addition to these vetted datasets, researchers and other stakeholders have shared sets of CDEs specific to their work or registries.


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Kansas City NSIGHT Precision Perinatology Dataset

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The Precision Perinatology Study 1 Database contains common data elements for clinical variables for use in neonatal intensive care. The dataset was developed by the Children’s Mercy Hospital Precision Perinatology Study 1 research team in collaboration with the NIH Sequencing in Genomic Medicine and public Health (NSIGHT) Consortium investigators as well as the NBSTRN. The work is funded by NICHD and NHGRI grant U19HD077693.

Arkansas Newborn Screening Long-Term Follow-up Database Study

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University of Arkansas for Medical Sciences (UAMS) /Arkansas Children’s Hospital/ Arkansas Children’s Hospital Research Institute. Study is supported by ANGELS, (Antenatal and Neonatal Guidelines, Education, and Learning System), a program at UAMS, supported by Arkansas Medicaid along with the UAMS, TRI, NCRR/NIH Grant 1 UL1 RR02998. Please acknowledge the Arkansas Newborn Screening Long-Term Follow-up Database Study if you utilize these data dictionaries. For further information, contact the Newborn Screening Program Director, Jo Ann Bolick (JABolick@uams.edu), or Informatics Program Manager, Julie Nick (JNick@uams.edu).