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Peer-Reviewed Publication
J Biomed Inform2026;105090.August 12, 2026Journal Article

Common data element (CDE) and AI-Enabled approaches for clinical data Management: Workshop proceedings from the NIH INCLUDE Project.

Joaquin M Espinosa1, Kate Burdekin2, Jeanette O Auman3, Benjamin Tyndall3, James F Cnota4, Sigan L Hartley5, Deborah J Fidler6, Susan Redline7, Anne Thessen8, Diane Catellier3, Robert J Carroll9, Tracie Rosser10, Pierrette Lo11, David Beaumont3, Karthik Natarajan12, Allison Heath13, Danniel Fabbri9, Maria Chatzou Dunford14, Alex Cheng15, Bryanna Schwartz16, Huiqing Li17
1Linda Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus, Aurora, CO 80045, United States. Electronic address: Joaquin.Espinosa@cuanschutz.edu.
2Kayvea LLC and RTI International, Research Triangle Park, NC 27709, United States.
3RTI International, Research Triangle Park, NC 27709, United States.
4Heart Institute, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH 45229, United States.
5School of Human Ecology and Waisman Center, University of Wisconsin-Madison, Madison, WI 53711, United States.
6Department of Human Development and Family Studies, Colorado State University, Fort Collins, CO 80523-1570, United States.
7Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA 02115, United States.
8University of North Carolina's Genetics Department, Chapel Hill, NC 27514, United States.
9Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37203, United States.
10Department of Human Genetics, Emory University School of Medicine, Atlanta, GA 30322, United States.
11Linda Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus, Aurora, CO 80045, United States.
12Department of Biomedical Informatics, Columbia University, New York, NY 10032, United States.
13Center for Data-Driven Discovery in Biomedicine, Children's Hospital of Philadelphia, Philadelphia, PA 19104, United States.
14Lifebit Biotech Ltd. 4th Floor, 28-29 Threadneedle Street, London EC2R 8AY, United Kingdom.
15Vanderbilt Institute of Clinical and Translational Research and Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37203, United States.
16National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, MD 20892, United States.
17National Heart, Lung, and Blood Institute, National Institutes of Health, Bethesda, MD 20892, United States. Electronic address: huiqing.li@nih.gov.
PubMed DOI

Abstract

OBJECTIVE: To evaluate challenges in managing multisite, longitudinal, and multisystem clinical data for Down syndrome (DS) research and identify approaches to improve standardization and reuse. METHODS: This report summarizes the outcomes and lessons learned from a NIH workshop convened by the INCLUDE Project to align and modernize clinical data management (CDM) practices using common data eleme…

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