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Recommendations for Common Data Elements for COVID-19 Studies Including Pediatric Participants

Promoting Data Harmonization to Accelerate COVID-19 Pediatric Research

Publicly Available, No Cost
Yes (RADx CDEs, CONNECTS NHLBI Common Data Elements, Pregnancy CDEs, Clinical Data Coordination Group (Project 5) CDEs, NIH CDE Repository CDC COVID-19 Community survey question bank, RADxUP)
We present a battery of recommended biomedical and psychosocial common data elements (CDEs) and measures that, when combined across datasets, can improve our collective understanding of COVID-19 in children. Representatives from multiple NIH Institutes and partner federal agencies in conjunction with intramural and extramural investigators developed these recommendations for use by any planned or upcoming COVID-19 study that includes children. We encourage researchers to include some or all of these measures—which cover key medical and psychosocial domains relevant to children—into their studies to maximize the potential for data harmonization while continuing to advance their own study goals. Common biomedical data elements and measures aim to accelerate our understanding of the clinical course of COVID-19 and its effects on children, which will continue to evolve as treatments and vaccines become available. Here we highlight CDEs and measures across eight domains, which include: Baseline Child Heath, Manifestations-Clinical, Manifestations- Laboratory, Manifestations—Cardiopulmonary Diagnostic Assessments, Manifestations – Imaging, Diagnosis, Treatment, and Outcomes. Recommendations assume that information from all patient visits (e.g., pediatric check-ups, COVID-19 testing, and delivery) can be collected via medical chart or downloaded data from electronic health records. Common psychosocial data elements and measures aim to advance our understanding of the psychological, behavioral, and social effects of the virus and the pandemic on children. Here we highlight CDEs and measures across ten domains, including: Social Determinants of Health (SDOH), Educational Factors, Community, Family, and Peer Factors, Social Media/Screen Time, Well-being factors, COVID-19 Stress and Worry, COVID-19 Attitudes, Behaviors, and Experiences, Health Related Behaviors, Mental/Behavioral Health, and Health Care.
WHO Post COVID CRF, Feudtner et al.: Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation. BMC Pediatrics 2014 14:199, St. Jude’s Pediatric COVID-19 U.S. Registry, JHU COVID-19 Community Response Survey, Diagnosis of MIS-C in Febrile Children CRF, Acute BRAVE Kids CRF, POP02 CRF, PRISM CRF, NIH COVID-19 Severity, National Survey of Children’s Health, 2020 Questionnaire, P270201 California Health Interview Survey|, Rutgers LINK Impact of Social Determinants of Health on Contracting COVID, P270301 PhenX: 6 item standard measure from USDA Economic Research Service, ABCD COVID-19 Impact Parent Report, ABCD COVID-19 Impact Parent Report, ABES, Tao, X. (2021). Social Media Use, Online Racial Discrimination, and Mental Health Risks Among Adolescents of Color. Fordham University, National Household Education Survey, 2019, CTC 2010 Youth Survey General School Environment, GCS Neuro COVID CRF, P211001, Healthy Pathways, 2020 COVID-19 CENSUS HOUSEHOLD PULSE, ECHO COVID-19 Adult Questionnaire, ECHO Child Self-Report, ECHO Child Parent-Report, NIH Toolbox Emotion, PROMIS, COVID-19 Experiences (COVEX), PX210801, Novel Coronavirus (COVID) Illness – Patient Report (NCI-PR), P960301, DSM-5, RCADS, Census, ACS-6, Functional Disability Inventory, MAP-DB Externalizing Symptoms:

Additional Descriptors

  • Medical Professional, Parent or Teacher, Researcher or Professional Interviewer, Self, Trained Non-Expert
  • In-Person Interview, Online or Mobile App, Paper, Phone Interview
    • 60+
      • Moderate
      • RedCap
        • English
          • 75-99
          • Guideline
            • Age
              • Age: Child
                • Children: Infant, Adolescent or Teen
            • Infectious Disease Outbreak
              • Biological or Infectious Agent
                • Biological or Infectious Agent: Virus
                  • Virus: SARS-CoV-2, SARS-CoV-1, MERS
                • Circulatory, Cardiovascular, Developmental, Diabetes or Obesity, Digestive or Excretory, Endocrine, Hepatic, Immune or Lymphatic, Malnutrition or Food Insecurity, Mental Health or Well-Being, Morbidity or Mortality, Neurological or Nervous System, Renal or Urinary, Respiratory, Skeletal
                  • Developmental: Birth Outcomes, Cognitive or Neurological or Psychological Disorder
                • Other
                  • Community Impacts, Comorbidities, Demographics, Diagnosis or Status or Treatment or Recovery, Domestic Violence or Family Impacts, Illicit Drug Use or Substance Abuse, Lifestyle or Quality of Life, Perceptions, Preparedness, Risk Reduction Behaviors, Social Determinants of Health, Social Support or Resilience, Symptoms
                    • Risk Reduction Behaviors: Vaccine-related
                  • National Institues of Health

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