Skip to Main Content

RTI uses cookies to offer you the best experience online. By and clicking “accept” on this website, you opt in and you agree to the use of cookies. If you would like to know more about how RTI uses cookies and how to manage them please view our Privacy Policy here. You can “opt out” or change your mind by visiting: http://optout.aboutads.info/. Click “accept” to agree.

Accept
RTI International
  • About
    • Office Locations
    • Executive Leadership
    • Corporate Governance
    • Partner with Us
      • U.S. Government
      • Clients and Funding Agencies
      • Industry and Commercial Clients
      • Foundations and Associations
      • Bilateral Agencies and Multilateral Banks
      • Universities and Academic Research Institutions
      • Suppliers and Small Businesses
    • Commitment to Quality
      • RTI's Client Listening Program
    • Ethics and Human Research Protection
    • Living Our Mission
    • Veteran Opportunities at RTI

    About

  • Practice Areas
    • Health
      • Public Health and Well-Being
      • Health Care Transformation
      • Behavioral Health
      • Health Behavior Change
      • Precision Medicine
      • RTI Health Solutions (RTI-HS)
      • RTI Center for Community Health Evaluation and Economics Research
      • Health Equity
      • RTI Health Advance
    • Transformative Research Unit for Equity​
      • Equity Capacity Building Hub
      • Social and Economic Justice Research Collaborative
      • Narrative Research and Community Engagement Lab
    • Education and Workforce Development
      • Early Childhood
      • K-12 Education
      • Postsecondary Education
      • Career and Adult Education and Workforce Development
      • Education Policy, Systems, and Governance
      • Education Research Methodologies
      • Education Technologies
    • International Development
      • Energy for Development
      • Environment
      • Global Food Security, Agriculture, and Nutrition
      • Global Health
      • International Education
      • Monitoring, Evaluation, Research, Learning, and Adapting (MERLA)
      • Youth and Economic Opportunity
      • Building Resilience Against COVID-19 in Developing Countries
      • Water, Sanitation, and Hygiene (WASH)
      • RTI Center for Governance
    • Climate Change
      • Clean Energy Technology and Renewables
      • Climate Finance
      • Climate Justice and Equity
      • Climate Planning, Preparedness and Resilience
      • Climate Policy
      • Climate Vulnerability, Adaptation, and Mitigation
      • Economic Impacts of Climate Change
    • Water
      • Food-Energy-Water Nexus
      • Water Quality
      • WASH (Water, Sanitation, Hygiene)
      • Water Resources Management
    • Energy Research
      • Carbon Capture and Utilization
      • Biomass Conversion
      • Natural Gas
      • Energy Efficiency
      • Industrial Water
      • Syngas Processing
    • Environmental Sciences
      • Air Quality
      • RTI Center for Water Resources
      • Urban Sustainability
      • Toxics
      • Building Resiliency in the FEW Nexus
      • Climate Change Sciences and Analysis
      • Environmental Policy
      • Environmental Justice
      • Sustainable Materials & Waste Management Solutions
    • Justice Research and Policy
      • RTI Center for Community Safety and Crime Prevention
      • RTI Center for Policing Research and Investigative Science
      • Child Well-Being and Family Strengthening
      • RTI Center for Forensic Sciences
    • Food Security and Agriculture
      • Market Systems Strengthening
      • Food Safety
      • Food and Nutrition
      • Global Food Security, Agriculture, and Nutrition
      • Climate-Smart Agriculture
      • Agricultural Innovation
      • Obesity Prevention
    • Innovation Ecosystems
      • Innovation Advising
      • Innovation for Economic Growth
      • Innovation for Emerging and Developing Economies
      • Innovation for Organizations
      • Research, Technology, and Innovation Policy
      • Technology Acceleration
    • Military Support
      • Military Behavioral Health
      • Military Health and Human Performance
      • Military Sexual Assault, Harassment, and Domestic Violence Prevention
      • Wearable Sensor Technologies
      • Military Health System Transformation

    Practice Areas

  • Services + Capabilities
    • Surveys and Data Collection
      • Survey Design
      • Instrument Development
      • Survey Methodologies
      • Data Collection
      • Establishment Surveys
      • Health Registries
      • Data Analysis and Reporting
      • Research Operations Center
    • Statistics and Data Science
      • Survey Statistics
      • Environmental Statistics
      • Coordinating Centers for Multisite Studies
      • Analysis and Design of Complex Data
      • Biostatistics
      • RTI Center for Data Science
    • Evaluation, Assessment and Analysis
      • Evaluation Design and Execution
      • Advanced Qualitative, Quantitative, and Mixed Methods
      • Evaluation, Monitoring, and Assessment
      • Economic Analysis
      • Evaluating Communication Interventions and Campaigns
      • Evidence Synthesis for Policy and Practice
      • Risk Assessment and Prediction
    • Program Design and Implementation
      • Systems Strengthening and Scaling
      • Capacity Assessment and Building
      • Policy Reform Support
      • Curriculum and Teacher Professional Development
      • Interventions and Prevention Programs
      • Implementation Science
    • Digital Solutions for Social Impact
      • Human-Centered Design of Digital Solutions
      • Digital Product Development
      • Digital Communication Campaigns
      • Digital Data Analytics
    • Research Technologies
      • Survey Technologies
      • Data Management and Decision Support Systems
      • Geospatial Science, Technology, and Visualization
      • ICT for Limited-Resource Settings
      • Mobile Applications
      • Web Applications
      • Bioinformatics
      • Interactive Computing
    • Drug Discovery and Development
      • Medicinal Chemistry
      • Molecular Design and Cheminformatics
      • Behavioral Pharmacology
      • Drug Metabolism and Pharmacokinetics (DMPK)
      • In Vitro Pharmacology, Bioassay Development, and High-Throughput Screening (HTS)
      • Isotope Labeling
      • Regulatory Consulting and Support for Medical Products
    • Analytical Laboratory Sciences
      • Bioanalytical and Toxicology Research
      • Forensic Sciences
      • Physicochemical Characterizations
      • Metabolomics
      • Proficiency Testing and Reference Materials
      • Microbiology
      • Analytical Chemistry and Pharmaceutics
    • Engineering & Technology R&D
      • Biomedical Technologies
      • Decarbonization Sciences
      • Environmental Exposure & Protection
      • Materials & Environment
      • Sustainable Energy Solutions

    Services + Capabilities

  • Centers
    • RTI Center for Advanced Methods Development
    • RTI Center for Communication Science
      • Communication Research
      • Communication Design
      • Communication Delivery
    • RTI Center for Data Science
    • RTI Center for Education Services
      • Teaching and Learning
      • Education Leadership
      • Peer Learning Networks
      • Strategic Consulting
    • RTI Center for Forensic Sciences
    • RTI Center for Global Noncommunicable Diseases
      • Program Financing & Economics for NCDs
      • Health Systems Strengthening for NCDs
      • Communication Science and Behavior Change for NCDs
      • Implementation Science for NCDs
    • RTI GenOmics, Bioinformatics, and Translational Research Center
      • Disability Studies
      • Ethics
      • Newborn Screening
    • RTI Center for Water Resources
      • Water Resources Sectors
      • Water Resources Services
      • Water Resources Tools
    • RTI Center for Governance
    • RTI Global Gender Center
    • North Carolina Center for Optimizing Military Performance
    • NCCU-RTI Center for Applied Research in Environmental Sciences
    • RTI Center for Climate Solutions

    Centers

  • Impact
    • Newsroom
    • Insights Blog
    • Events
    • Publications
    • RTI Press
      • About the RTI Press
      • Instructions for Authors
      • RTI Press Collections
    • Projects
    • Global Reach
      • Asia
      • Eastern Europe and Central Asia
      • RTI International India
      • Africa
      • Middle East and North Africa (MENA)
      • Latin America and the Caribbean (LAC)

    Impact

  • Experts
    • Our Experts
    • In-Depth With Our Experts
    • Related News
    • Experts In the Media
    • RTI Fellow Program

    Experts

  • Emerging Issues
    • COVID-19 Research
    • Artificial Intelligence
    • Global Health Security
    • Cannabis Research
    • Opioid Research
      • Interventions for Opioid Use Disorders
      • Preventing Opioid Misuse and Overdose
      • Treating Opioid Use Disorders
    • Policing Research and Investigative Science
    • Drone Research and Application
    • E-cigarette Research
    • Zika Virus Research
    • Integrated Governance

    Emerging Issues

  • COVID-19 Research + Response
  • Global Reach
  • Insights Blog
  • Newsroom
  • RTI Press
  • Publications
  • Partner With Us
  • Careers
  • Facebook IconTwitter IconInstagram IconYouTube IconLinkedin Icon
  • Home
  • Impact
  • RTI Press
  • Standard measurement protocols for pediatric development research in the PhenX Toolkit

Standard measurement protocols for pediatric development research in the PhenX Toolkit

By Michelle Bosquet Enlow, Richard J. Chung, Melissa A. Parisi, Sharon K. Sagiv, Margaret A Sheridan, Annemarie Stroustrup, Rosalind J. Wright, Lisa A. Cox, Jennifer Beverly, Tabitha Hendershot, Deborah R. Maiese, Carol M. Hamilton.

September 2022 Open Access Peer Reviewed

DOI: 10.3768/rtipress.2022.mr.0049.2209

Check for Updates Download PDF
Enlow, M. B., Chung, R. J., Parisi, M. A., Sagiv, S. K., Sheridan, M. A., Stroustrup, A., Wright, R. J., Cox, L. A., Beverly, J., Hendershot, T., Maiese, D. R., & Hamilton, C. M. (2022). Standard measurement protocols for pediatric development research in the PhenX Toolkit. RTI Press. RTI Press Methods Report No. MR-0049-2209 https://doi.org/10.3768/rtipress.2022.mr.0049.2209
Copy citation
Share
  • Share on Facebook
  • Share on Twitter
  • Share on Linkedin
  • Email
Key Points
  • The purpose of this report is to introduce the research community to the Pediatric Development Research Domain of the National Institutes of Health (NIH)–supported PhenX Toolkit (consensus measures for Phenotypes and eXposures).
  • The PhenX Toolkit provides a catalog of recommended measurement protocols to address a wide range of research topics that are suitable for inclusion in a variety of study designs.
  • In 2018, the Pediatric Development Working Group of experts identified 18 well-established protocols of pediatric development for inclusion in the Toolkit to complement existing protocols.
  • Collectively, the protocols assess parenting, child care attendance and quality, peer relationships, home environment, neonatal abstinence, emotional and behavioral functioning, and other factors that influence child development.
  • Using standard protocols in studies with pediatric participants will support consistent data collection, improve data quality, and facilitate cross-study analyses to ultimately improve child health.

Abstract

A challenge in conducting pediatric research is selecting reliable, valid measurement protocols, across a range of domains, that are appropriate for the
developmental level of the study population. The purpose of this report is to
introduce the research community to the Pediatric Development Research Domain
of the National Institutes of Health (NIH)–supported PhenX Toolkit (consensus
measures for Phenotypes and eXposures). The PhenX Toolkit provides a catalog of recommended measurement protocols to address a wide range of research topics that are suitable for inclusion in a variety of study designs. In 2018, the Pediatric Development Working Group of experts identified 18 well-established protocols of pediatric development for inclusion in the Toolkit to complement existing protocols. Collectively, the protocols assess parenting, child care attendance and quality, peer relationships, home environment, neonatal abstinence, emotional and behavioral functioning, and other factors that influence child development. The Toolkit provides detailed data collection protocols, data dictionaries, and worksheets to help investigators incorporate these protocols into their study designs. Using standard protocols in studies with pediatric participants will support consistent data collection, improve data quality, and facilitate cross-study analyses to ultimately improve child health.

Creative Commons © 2023 RTI International. This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Contents

  • Introduction
  • Methods
    • PhenX Project Overview
      • PhenX Pediatric Development Working Group
      • Results
        • Measurement Protocols in the PhenX Toolkit
        • Discussion
          • Limitations
            • Child Sleep
              • Anxiety in Pregnancy
                • Parenting and Caregiving Quality
                  • Evolving Landscape and Language
                    • Biomarkers
                    • Conclusions
                    • Acknowledgments
                    • References

                    Standard Measurement Protocols for Pediatric Development Research in the PhenX Toolkit

                    By Michelle BosquetEnlowRichard J.ChungMelissa A.ParisiSharon K.SagivMargaret A.SheridanAnnemarieStroustrupRosalind J.WrightLisa A.CoxJenniferBeverlyTabithaHendershotDeborah R.MaieseCarol M.Hamilton

                    Introduction

                    The PhenX (consensus measures for Phenotypes and eXposures) Toolkit is a publicly available catalog of measurement protocols for use in research with human participants that are recommended by experts in their field. PhenX has been funded since 2007 by the National Human Genome Research Institute (NHGRI), with additional funding from other National Institutes of Health (NIH) Institutes and Centers. The goal of the PhenX Toolkit is to provide investigators with a common currency of protocols for biomedical research that they can use with confidence, especially in areas outside of their primary area of expertise. Research that addresses pediatric health often must integrate multiple scientific disciplines, including (but not limited to) genetics, epigenetics, developmental neuroscience, psychology, psychiatry, epidemiology, pediatrics, and public health.1 The PhenX project strives to include measurement protocols suitable for all life stages, with many protocols in the Toolkit suitable for pediatric populations.

                    In 2018, the PhenX project recognized that critical areas in pediatric development had not been addressed within the Toolkit.2,3 Accordingly, an interdisciplinary working group (WG) was assembled to identify developmentally informed, broadly validated measurement protocols that address the unique needs of pediatric populations and were not already represented in the Toolkit. This Pediatric Development Working Group (PDWG), using the well-established PhenX consensus process,4 including vetting recommended protocols with the scientific community, identified protocols for inclusion in the PhenX Toolkit. The 18 measurement protocols were released in the PhenX Toolkit in the Pediatric Development domain in December 2019, along with the associated tools and information needed to incorporate these protocols into study designs. This resource is intended to facilitate collaboration and data sharing among pediatric investigators and improve the consistency of data collection, data quality, and reproducibility. The goal of this report is to introduce the scientific community to the new standard protocols in the PhenX Toolkit for Pediatric Development.

                    Methods

                    PhenX Project Overview

                    In 2007, the National Human Genome Research Institute (NHGRI) recognized that identifying and promoting a common currency of standard measures would facilitate data sharing and cross-study analyses and potentially increase the scientific impact of individual studies.5 The goal for the resultant PhenX Toolkit is to address a broad range of research topics or domains, with a relatively small number of recommended measurement protocols (~15) per domain, to facilitate investigators’ selection of protocols for their study designs. In general, the protocols in the Toolkit are well established, recommended by experts in the scientific community, and low burden in terms of cost, time, and logistic complexity for both investigators and participants. The Toolkit includes protocols in the languages in which they are available from the source; for example, when the source provides the Toolkit with the protocol in Spanish and Chinese, it is made available to users. All Toolkit protocols are identified by WGs of experts in the relevant research domain.

                    The PhenX Steering Committee (SC) provides ongoing, overarching guidance to the PhenX project, prioritizes the research domains for the Toolkit, and establishes the initial scope of each domain. PhenX WGs operate within the guidance provided by the SC, including established criteria to inform the selection of protocols to be included in the PhenX Toolkit. For a detailed discussion of SC guidance and the PhenX consensus process, see Maiese et al.4

                    PhenX Pediatric Development Working Group

                    In 2018, the PhenX SC prioritized the addition of a PhenX Pediatric Growth and Development domain to address the need for a set of well-established research protocols for pediatric research. Upon initial review of existing PhenX Toolkit measurement protocols, the SC determined that the Toolkit had robust content on pediatric growth (e.g., anthropometric protocols for measuring the height, weight, and other growth characteristics of a child). Thus, the SC decided on a more focused domain for Pediatric Development. The initial scope for this domain included the areas of development, exposures, social environment, and child lifestyle. The scope, in turn, guided the identification and selection of six experts to serve on the PDWG, which was led by a chair and supported by a PhenX SC Liaison. The PDWG comprised researchers from five academic institutions and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and members had expertise in perinatology, pediatrics, developmental and clinical psychology, public health, and epidemiology.

                    The PDWG followed the standard process for selecting measurement protocols, which includes an introductory call, a scope review call, a protocol consensus workshop, and a final recommendations meeting. Additional interim meetings were scheduled as needed. Because the PhenX Toolkit covers a wide range of research domains, there were already numerous protocols available for administration to pediatric populations. These included protocols for commonly collected sociodemographic data (e.g., ethnicity and race, annual family income, household roster); diet and nutrition; speech, hearing, and language; and child-specific assessments of temperament, intelligence, autism, school attendance and performance, and environmental exposures. The PDWG was tasked with building on the existing Toolkit content by focusing on the selection of protocols that are unique or critical to pediatric development research needs and that complement existing PhenX Toolkit content.

                    The PDWG discussed the age ranges to cover with the new protocols. The guidance was to include a continuum from birth through adolescence, as relevant for a given construct; prenatal exposures were also considered applicable for some constructs. The PDWG decided not to pursue the initially proposed scope elements of physical environmental exposures in childhood (e.g., exposure to pollutants, toxins, chemicals, medications) to focus more tightly on pediatric development. Each WG member assumed responsibility for scope elements for which they had expertise. During the Protocol Consensus Workshop, each member presented their findings from a literature review and made recommendations about which protocols to include, given the guidance from the SC. Their consideration included identifying existing protocols already in the Toolkit that sufficiently addressed their assigned scope element to avoid adding competing protocols to the Toolkit.

                    Following PhenX guidance, the PDWG prioritized consideration of existing, well-established measures that are in the public domain. Measurement protocols were assessed in terms of the burden and requirements for both study participants and investigators. Burden of use was assessed in terms of time, equipment, training, and data collection requirements. The PDWG considered measures outside of the public domain if those measures were well-established and best addressed the construct of interest or if suitable measures did not exist in the public domain. Because the PhenX Toolkit is a US effort, the primary focus was on measures for use in domestic research, but the PDWG considered international measurement standards as appropriate.

                    The PDWG initially selected 20 protocols for distribution to and feedback from the scientific community, including registered users of the PhenX Toolkit and other project participants, such as National Institutes of Health (NIH) liaisons, prior and current members of other PhenX WGs, and PhenX SC members. Respondents were asked to provide comments about the appropriateness, usability, and limitations of the proposed protocols and the value of including each in the PhenX Toolkit. There was general agreement about the inclusion of these recommended protocols, with lack of public access noted as a limitation for those protocols that were not the public domain. In the final meeting to review feedback from outreach, the PDWG considered and agreed with this limitation but concluded that the four proprietary protocols were the most widely used and that there were not alternative protocols publicly available that met the criteria of being well-established or providing sufficient coverage of the scope element.

                    The PDWG selected 18 measurement protocols (described in Table 1) to include in the new Pediatric Development domain of the PhenX Toolkit. As with all PhenX Toolkit protocols, a bioinformatics pipeline processed information about these 18 measurement protocols for loading into the Toolkit, and protocol-specific data dictionaries and data collection worksheets were developed.6 The PDWG agreed that an additional 2 protocols were important resources but were more appropriate as Supplemental Information reference materials. The first Supplemental Information protocol, Child’s Living Environment, was from the Avon Longitudinal Study of Parents and Children (ALSPAC). This protocol includes extensive use of British English words (e.g., English heating systems, currency), potentially limiting its usefulness in US-based research, which is the main target of the NIH-funded PhenX Toolkit. However, some researchers may find the protocol valuable as a model for collecting data regarding a child’s living environment. Another ALSPAC-derived protocol, Child’s Lifetime Household Composition, was included as one of the 18 Pediatric Development measurement protocols, because it included very limited use of British English. The other Supplemental Information protocol, the Youth Alcohol Screener, does not provide sufficient details to ensure consistent data collection and thus did not meet criteria for inclusion in the Toolkit; however, it may be of interest to researchers requiring a brief screening measure.

                    Results

                    Measurement Protocols in the PhenX Toolkit

                    Table 1 presents the 18 Pediatric Development measurement protocols selected by the PDWG. These protocols cover a range of areas of child and caregiver functioning and psychosocial exposures relevant to pediatric development research. Specifically, the Pediatric Development domain includes validated measurement protocols of neonatal abstinence syndrome and opioid withdrawal syndrome; child care/preschool quality; academic performance; quality of peer relationships; bullying experiences; child mental health; psychological resilience; household stability, quality, and functioning; and caregiver mental health and parenting style. The domain includes both self-report and other-report measurement protocols, where relevant, to provide flexibility in study design and comprehensive assessments of children’s functioning and their environments.

                    Measurement protocols included in the PhenX Pediatric Development domain
                    PhenX protocol name Protocol source Participant Mode of Administration
                    1. Academic Performance and Achievement—Child Report—Grades 4 to 6 Healthy Pathways—Academic Performance Child Self-Reporta Children in grades 4–6 Self-administered questionnaire
                    2. Academic Performance and Achievement—Parent Report—Grades 4 to 6 Healthy Pathways—Academic Performance Parent or Caregiver Reportb Primary caregiver of children in grades 4–6 Self-administered questionnaire
                    3. Bullying Revised Olweus Bully/Victim Questionnaire (R-OBVQ)c Students in grades 3–12 Self-administered questionnaire
                    4. Childcare Arrangements—Education Setting, 2.9–5 years old Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Study of Early Child Care and Youth Development: Phase II, 1996–1999 [United States]; the NICHD Study of Early Child Care Form 39C—a Revision 06/16/95d Parent or primary caregiver of children aged 2.9–5 years Interviewer-administered questionnaire
                    5. Childcare Arrangements—Childcare setting, birth to 5 years NICHD Study of Early Child Care and Youth Development, Phase 1, 1991–1995 [United States]e Children aged birth to 5 years Interviewer-administered questionnaire
                    6. Child’s Lifetime Household Composition Avon Longitudinal Study of Parents and Children—Mother and Home (Section C)f Child’s mother or person taking the role of the mother Self-administered questionnaire
                    7. Household Chaos and Unpredictability Confusion, Hubbub, and Order Scale (CHAOS)g Mothers of infants and toddlers Self-administered questionnaire
                    8. Interviewer-Administered Pediatric Psychiatric Assessment Diagnostic Infant and Preschool Assessment (DIPA)h Caregivers of children aged 1–6 years Interviewer-administered questionnaire
                    9. Neonatal Abstinence Syndrome (NAS) and Neonatal Opioid Withdrawal Syndrome (NOWS) Finnegan Neonatal Abstinence Scoring Tool (FNAST) 2019 Finali,j Hospitalized full-term newborns Clinical Examination
                    10. Parenting Behavior—Child Alabama Parenting Questionnaire (APQ) Child Formk Children aged 6–18 years Self-administered questionnaire
                    11. Parenting Behavior—Parent Alabama Parenting Questionnaire (APQ) Parent Formk Parents of children aged 6–18 years Self-administered questionnaire
                    12. Peer Relationships—Proxy Report Patient-Reported Outcomes Measurement Information System (PROMIS©) Parent Proxy Item Bank v2.0—Peer Relationshipsl Parents serving as proxy reporters for their child (youth aged 5–17 years) Self-administered questionnaire
                    13. Peer Relationships—Self Report PROMIS© Pediatric Item Bank v2.0—Peer Relationshipsl Children aged 8–17 years Self-administered questionnaire
                    14. Psychological Resilience—Child The Child and Youth Resilience Measure (CYRM) Child Versionm Children aged 5–9 years old Interviewer-administered questionnaire
                    15. Emotional and Behavioral Symptoms of Children—Ages 1.5–5 Child Behavior Checklist for Ages 1.5–5 (CBCL/1.5–5)n • Parent, Caregiver or Teacher of Children aged 1.5–5 years;
                    • Supplemental Language Survey Development section aged for 18–35 months
                    Proxy-administered questionnaire
                    16. Emotional and Behavioral Symptoms of Children—Ages 6–18 (School age) Child Behavior Checklist for Ages 6–18 (CBCL/6–18)n • Parent or surrogate of child aged 6–18 years;
                    • Teacher of child aged 6–18 years;
                    • Youth self-report for child aged 11–18 years
                    Self- or proxy-administered questionnaire
                    17. Emotional and Behavioral Symptoms of Parents/Caregivers Achenbach System of Empirically Based Assessment (ASEBA)—Adult Self Report (ASR) and Adult Behavior Checklist (ABCL)o 18–59 years old Self- or proxy-administered questionnaire
                    18. Quality of the Child’s Home Environment Home Observation for Measurement of the Environment (HOME)–Revised Edition; National Longitudinal Study of Youth Children & Young Adultsp Parents of infants and young children Interviewer-administered questionnaire
                    Supplemental Information
                    PhenX protocol name Protocol source Participant* Mode of Administration
                    1. Child’s Living Environment ALSPAC—The Avon Longitudinal Study of Parents and Children. I. Study Methodologyf Child’s mother or person taking the role of the mother Self-administered questionnaire
                    2. Youth Alcohol Screener Alcohol Screening and Brief Intervention for Youth, A Practitioner’s Guideq Children aged 9–18 Interviewer-administered questionnaire
                    Note: “Participant” corresponds to the respondent from the Protocol Source; this information is also provided in the PhenX Toolkit.
                    Bevans KB, Riley AW, Forrest CB. Development of the Healthy Pathways Child-Report Scales. Qual Life Res. 2010;19:1195–1214. https://doi.org/10.1007/s11136-010-9687-4
                    Bevans KB, Riley AW, Forrest CB. Development of the Healthy Pathways Parent-Report Scales. Qual Life Res. 2012;21:1755–70. https://doi.org/10.1007/s11136-012-0111-0
                    Olweus D. The revised Olweus Bully/Victim Questionnaire. Bergen (Norway): Research Center for Health Promotion (HEMIL Center), University of Bergen; 1996.
                    US Department of Health and Human Services, National Institutes of Health, Eunice Kennedy Shriver National Institute of Child Health and Human Development. NICHD study of early child care and youth development: phase II, 1996–1999. 2014.
                    US Department of Health and Human Services, National Institutes of Health, Eunice Kennedy Shriver National Institute of Child Health and Human Development. NICHD study of early child care: 21940-questionnaire data collection instruments form 5B revision. 6 Mar 1991.
                    Golding J, Pembrey M, Jones R, ALSPAC Study Team. ALSPAC—the Avon Longitudinal Study of Parents and Children. I. Study methodology. Paediatr Perinat Epidemiol. 2001;15:74–87. https://doi.org/10.1046/j.1365-3016.2001.00325.x
                    Matheny AP, Wachs TD, Ludwig JL, Phillips K. Bringing order out of chaos: psychometric characteristics of the Confusion, Hubbub, and Order Scale. J Appl Dev Psychol. 1995;16:429–44. https://doi.org/10.1016/0193-3973(95)90028-4
                    Scheeringa MS. Diagnostic Infant and Preschool Assessment (DIPA) (version 11/17/10). 2004.
                    D’Apolito K, Finnegan L. Assessing signs and symptoms of neonatal abstinence using the Finnegan Scoring Tool: an inter-observer reliability program. Neo Advances; 2010.
                    Finnegan LP, Connaughton JF Jr, Kron RE, Emich JP. Neonatal abstinence syndrome: assessment and management. Addict Dis. 1975;2:141–58.
                    Shelton KK, Frick PJ, Wootton J. Assessment of parenting practices of families of elementary school-age children. J Clin Child Psychol. 1996;25:317–29. https://doi.org/10.1207/s15374424jccp2503_8
                    Dewalt DA, Thissen D, Stucky BD, Langer MM, DeWitt EM, Irwin DE, et al. PROMIS Pediatric Peer Relationships Scale: development of a peer relationships item bank as part of social health measurement. Health Psychol. 2013;32:1093–1103. https://doi.org/10.1037/a0032670
                    Ungar M, Liebenberg L. Assessing resilience across cultures using mixed methods: construction of the Child and Youth Resilience Measure. J Mix Methods Res. 2011;5:126–49. https://doi.org/10.1177/1558689811400607
                    Bilenberg N. The Child Behaviors Checklist (CBCL) and related material: standardization and validation in Danish population based and clinically based samples. Acta Psychiatr Scand Suppl. 2007;100:2–52. https://doi.org/10.1111/j.1600-0447.1999.tb10703.x
                    Achenbach TM, Dumenci L, Rescorla LA. Ratings of relations between DSM-IV diagnostic categories and items of the Adult Self-Report (ASR) and Adult Behavior Checklist (ABCL). Research Center for Children, Youth and Families; 2003. https://aseba.org/research/ratings-of-relations-between-dsm-iv-diagnostic-categories-and-items-of-the-adult-self-report-asr-and-adult-behavior-checklist-abcl-pdf/
                    Caldwell B, Bradley R. Home Observation for Measurement of the Environment (HOME)-Revised Edition. Little Rock: University of Arkansas, Little Rock; 1984.
                    National Institute on Alcohol Abuse and Alcoholism, American Academy of Pediatrics. Alcohol screening and brief intervention for youth, a practitioner’s guide; 2015.

                    The protocols are largely questionnaires or interviews that can be flexibly administered with a low burden in a variety of settings with minimal training; only one protocol, the Neonatal Abstinence Syndrome (NAS) and Neonatal Opioid Withdrawal Syndrome (NOWS), requires independent clinical observation with specialized training. The PDWG considered existing Toolkit content carefully when recommending these measurement protocols for inclusion in the Pediatric Development domain. Researchers are encouraged to use the life-stage filter within the search function of the Toolkit to identify the large number of measures that could be relevant to their investigations of child health and development, including many measures outside of the Pediatric Development domain. The measurement protocols added by the PDWG build on the existing content to add depth to the Toolkit for pediatric research.

                    Discussion

                    The PhenX Toolkit is a web-based resource (http://www.phenxtoolkit.org/) that researchers can use to inform their choice of protocols or to broaden their studies by adding protocols outside the scope of their original study design or their range of expertise. The Toolkit is not prescriptive, so investigators may select study-specific protocols from the PhenX Toolkit that best meet their needs within the context of available resources, study design, and research questions. Use of common measures allows for easier comparability of findings across studies. Because the majority of protocols in the PhenX Pediatric Development Domain have established validity with low burden and low training needs, they can be used by investigators and clinicians for whom pediatric well-being is a primary research focus as well as by researchers with expertise in other areas who would like to adopt pediatric measures into their studies. Incorporating well-established and validated protocols during the initial stages of study design will ensure that data are collected according to accepted standards.7 The development of a pediatric domain within the PhenX Toolkit aligns with NIH’s recognition of the critical importance of pediatric research and consequent policies requiring the inclusion of children in clinical research.2,3,8 Notably, PhenX, an NIH-supported endeavor, has been cited in 520 NIH funding opportunity announcements to date; thus, investigators can be confident that proposed use of PhenX protocols will be well received by NIH review panels.

                    The adoption of common, validated protocols into pediatric development research is timely in light of recent efforts by funding agencies, including the NIH, to support “big science” that combines data across existing datasets and collects data from multiple cohorts across settings to increase sample sizes and, consequently, the power to address pressing, complex developmental questions for improving child health (e.g., Environmental influences on Child Health Outcomes, or ECHO).9 The use of common measurement protocols minimizes the challenges inherent in harmonizing data collected across studies that use different instruments and more easily allows validation of study findings through replication of results across studies that used the same protocols for data collection.

                    Greater implementation of common research measures also would address several scientific concerns that have emerged in recent years. For example, failed replication of published findings raises questions about the validity of the findings and may consequently lead to declines in public support of research funding and reluctance to implement health recommendations that emerge from such studies.10,11 Potential solutions to this problem include conducting multiple replication studies and studies with large sample sizes, which would require coordinated efforts among multiple investigators and informed selection of well-validated measures of the constructs of interest.11

                    Harmonization across studies can be hindered by differing definitions of outcomes and heterogeneity of data collection methods across studies, which can limit direct between-study comparisons, meta-analysis of data, and the combining of datasets across studies to create large sample sizes.7,12 Moreover, the adoption of standard measures would support more effective and efficient use of limited resources by allowing the combination of separate datasets into larger composite datasets that can be used to address novel research questions that may not have been considered at the time of data collection.7 These efforts would have the potential to increase the scientific impact of individual studies.

                    Use of standard measures will have particular importance in the study of rarer conditions in small- to moderate-sized populations, allowing for statistical power that is typically not achievable via individual studies.7 Notably, in recent years, there has been unprecedented growth in the collection of longitudinal patient-level pediatric data as a result of the adoption of a variety of electronic systems in clinical settings.7 The PhenX Toolkit provides a resource for clinicians to identify easily a set of established research measures, including measures outside of their area of expertise, that then can be incorporated into electronic health systems, enabling the expansion of the size, scope, and reach of pediatric research by including clinical settings that historically may have been excluded from the scientific base.7

                    Limitations

                    Although freely available protocols were preferred for inclusion in the Toolkit, the PDWG selected some protocols that are categorized in the Toolkit as “limited availability,” meaning that users must contact the source to obtain access (e.g., register for permission to use, pay fees for usage). Such measures were chosen when the PDWG determined that a suitable, freely available protocol did not exist. Additionally, in its review of the literature, the PDWG acknowledged important areas for which measures could not be identified that met PhenX Toolkit requirements (e.g., well-established, low burden) or have not yet been developed. As described below, these are areas for further research and exploration. Also included below is a description of challenges the PDWG encountered around the language used in some of the selected measures for inclusion in the Toolkit.

                    Child Sleep

                    The PDWG recognized the critical importance of sleep to child health and well-being.13–18 However, the group was unable to identify a broadly validated instrument that it could recommend for use in pediatric populations. The PDWG sought input from the research community during outreach but received no protocol suggestions.

                    Anxiety in Pregnancy

                    The PDWG noted the large body of scientific literature demonstrating the significant impact of maternal mental health in pregnancy on a range of pediatric health outcomes.19–22 Pregnancy and the postpartum period present specific demands that may not allow for standard mental health assessments to be used validly in the peripartum period but rather require tailored instruments. For example, diagnostic criteria for depression include several symptoms that may be present in pregnancy and not be indicative of psychological distress (e.g., changes in appetite, weight, and sleep). At the time the PDWG was convened, the PhenX Toolkit already included a validated measurement protocol of maternal depressive symptoms during the peripartum period (Edinburgh Postnatal Depression Scale23) that takes into account these considerations. However, the PDWG could not identify an appropriate instrument for assessing anxiety in pregnancy.

                    Although several clinical interviews and questionnaires exist for evaluating general anxiety in the PhenX Toolkit (e.g., anxiety subscale of the Symptom Check List 90;24 Structured Clinical Interview for DSM-5® Disorders-Clinician Version25), these protocols do not distinguish clinical anxiety symptoms from common experiences resulting from pregnancy and in caring for a newborn infant (e.g., somatic symptoms). They therefore may have decreased validity during the peripartum period. Furthermore, these measures do not address pregnancy-related anxiety (i.e., anxiety specific to worries about the health of the fetus/infant and concerns about the labor and delivery process). The extant literature suggests that pregnancy-related anxiety is distinct from general anxiety and depressive symptoms and has specific impact on maternal and child outcomes.26–28 Although the PDWG identified several pregnancy-related anxiety measures in the literature, none of them met PhenX Toolkit criteria for inclusion because they lacked sound theoretical or psychometric properties or sufficient scope and depth for adequate assessment. Given that the pregnancy and postpartum periods are known risk periods for the onset or exacerbation of maternal mental health difficulties and that maternal mental health during these periods can have major, long-term impact on child health,29–31 the PDWG encourages researchers to develop standardized, validated instruments that specifically address the unique considerations of assessing maternal mental health comprehensively during these periods.

                    Parenting and Caregiving Quality

                    A large body of research indicates the importance of parenting/caregiving quality, particularly in early life, on child health outcomes, and direct observation is considered the “gold standard” for assessing caregiving quality.32–36 However, assessing caregiving quality by direct observation is quite burdensome given the need to have highly trained coders score observations that are collected in a standardized format. Therefore, the PDWG elected to recommend the Alabama Parenting Questionnaires, well-established instruments that are easy to use and involve much less burden on the investigator and the participant. In addition, the recommended Home Observation for Measurement of the Environment protocol, also well established, may be used to capture additional information about aspects of the caregiving environment. Studies that involve caregiving quality as a central construct may elect to use an established observation measure but consider using the PDWG-recommended questionnaires as adjunct measures.

                    Similarly, standardized observational data collection protocols exist for assessing the quality of a child’s daycare, child care, or preschool environment. However, the PDWG determined that such measures were highly burdensome because they require trained coders to conduct hours of observation in a child’s care setting. Further, the PDWG concluded that such observational measures would provide data at a level of detail unlikely to be needed by pediatric studies outside of those centrally focused on daycare or preschool quality. Rather, the PDWG chose a protocol that addresses parents’ or caregivers’ perceptions of their child’s care, including questions related to the reliability, cost, and quality of care, because these characteristics were determined to be particularly relevant for child health outcomes and measurable via caregiver report.37–40

                    Evolving Landscape and Language

                    The PDWG confronted challenges when considering protocols with questions based on outdated assumptions (e.g., heterosexual nuclear family structure, obsolete technology available in the home). Ultimately, the PDWG elected to include these measures in the Pediatric Development domain because the protocols were the best available to assess the constructs considered essential for inclusion. However, because existing protocols are not modified for inclusion in the PhenX Toolkit, the PDWG recognizes that these measures may need to be modified by users for their specific study populations and encourages investigators to undertake efforts to update these measures, including conducting studies to document the validity of revised measures.

                    Additionally, although the PDWG chose measurement protocols that have been validated in various populations, the group recognizes the need for further research on how the protocols may function differently in different sociodemographic groups. Of the 18 pediatric protocols added to the Toolkit, three are available from the source in languages other than English; two of these are not open source and therefore cannot be displayed in the Toolkit but can be obtained by contacting the publisher. Before implementing any PhenX Toolkit measurement protocol in a study, investigators should consider the suitability of the measurement protocol for their particular study population and research questions.

                    Biomarkers

                    The PDWG recognized the importance of biomarkers in predicting and tracking pediatric outcomes and considered a range of wearable devices and exposure measures. However, the group was unable to identify any biomarker measures that had achieved sufficient technological advancement and met PhenX requirements of being clearly defined, well established, low burden, and broadly validated to be recommended at this time for wide implementation. These protocols are expected to evolve such that they can be considered by a future PhenX WG focused on biomarker assessments.

                    Conclusions

                    Pediatric research aims to prevent and treat disease and to optimize children’s physical, mental, and developmental health outcomes. Preventing or resolving poor health among youth not only reduces suffering and psychosocial burdens in childhood but also promotes improved health and economic productivity into adulthood.2,41 Moreover, an increasing body of research strongly indicates that several physical and mental health outcomes that emerge or persist in adulthood have origins in early life, further emphasizing the importance of pediatric research in maximizing human health, productivity, and well-being across the lifespan.2,42–54

                    The PhenX PDWG endeavored to provide the pediatric research and clinical community with a set of measurement protocols to address critical areas for child health and well-being and complement pediatric protocols already included in the PhenX Toolkit. The PDWG added 18 protocols to measure a range of indicators of child functioning and developmental contexts or psychosocial exposures. Incorporating standard protocols in research studies of children will foster collaboration and data sharing, provide consistency in data collection, and enable the harmonization of datasets across studies and cohorts to permit replication of study findings and sufficient power to address complex developmental questions.

                    The PhenX Toolkit also serves as a powerful, efficient resource to aid investigators searching for appropriate measures outside of their area of expertise to include in their studies. This resource provides data collection support, including available data collection worksheets to simplify creating data collection forms and data dictionaries to facilitate data management and integration into Research Electronic Data Capture (REDCap).

                    Using the PhenX Toolkit may help investigators respond to NIH’s growing emphasis on and requirements for data management and sharing practices consistent with FAIR (Findable, Accessible, Interoperable, and Reusable) data principles.55,56 The PhenX Toolkit was designed to address these needs, to hasten research advances, and ultimately, to maximize the potential impact of efforts to improve child health.

                    Acknowledgments

                    Thank you to the PhenX Toolkit team for their contributions in operationalizing and maintaining the PhenX Toolkit website. Thank you also to the PhenX Steering Committee for feedback and support throughout the process of developing this domain. Research reported in this publication was provided by a Genomic Research Grant (U41HG007050) from National Human Genome Research Institute (NHGRI), with current or prior funding support from the National Institute on Drug Abuse (NIDA); Office of Behavioral and Social Sciences Research (OBSSR); National Institute of Mental Health (NIMH); National Heart, Lung, and Blood Institute (NHLBI); National Institute on Minority Health and Health Disparities (NIMHD); and Tobacco Regulatory Science Program (TRSP).

                    Conflict of Interest: The authors have no conflicts of interest or financial relationships relevant to this article to disclose.

                    Disclaimer: This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by, the National Institutes of Health (NIH), the US Department of Health and Human Services (HHS), or the US Government.

                    RTI Press Associate Editor: Michael Willoughby

                    References

                    1Tarazi C, Skeer M, Fiscella K, Dean S, Dammann O. Everything is connected: social determinants of pediatric health and disease. Pediatr Res. 2016;79(1-2):125–6. 10.1038/pr.2015.22026841091
                    2Gitterman DP, Langford WS, Hay WW Jr. The uncertain fate of the National Institutes of Health (NIH) pediatric research portfolio. Pediatr Res. 2018;84(3):328–32. 10.1038/s41390-018-0035-729976967
                    3National Institutes of Health. Inclusion of children in clinical research: change in NIH definition. NOT-OD-16–010. 2015. https://grants.nih.gov/grants/guide/notice-files/not-od-16-010.html
                    4Maiese DR, Hendershot TP, Strader LC, Wagener DK, Hammond JA, Huggins W. PhenX—establishing a consensus process to select common measures for collaborative research. RTI Press Publication MR-0027-1310. 2013. 10.3768/rtipress.2013.mr.0027.1310
                    5National Institutes of Health. High-priority phenotype and exposure measures for cross-study analysis in genome-wide association studies (U01). RFA-HG-07–006. 2007. https://grants.nih.gov/grants/guide/rfa-files/RFA-HG-07-006.html
                    6Cox LA, Hwang S, Haines J, Ramos EM, McCarty CA, Marazita ML et al. Using the PhenX Toolkit to select standard measurement protocols for your research study. Curr Protoc. 2021;1(5):e149. 10.1002/cpz1.14934038028
                    7Kahn MG, Bailey LC, Forrest CB, Padula MA, Hirschfeld S. Building a common pediatric research terminology for accelerating child health research. Pediatrics. 2014;133(3):516–25. 10.1542/peds.2013-150424534404
                    8Lauer M. NIH announces inclusion across the lifespan policy. NIH extramural news: open mike. 2018. https://nexus.od.nih.gov/all/2018/01/24/nih-announces-inclusion-across-the-lifespan-policy/
                    9Gillman MW, Blaisdell CJ. Environmental influences on child health outcomes, a research program of the National Institutes of Health. Curr Opin Pediatr. 2018;30(2):260–2. 10.1097/MOP.000000000000060029356702
                    10Chung PJ. Making the next seven great achievements in pediatric research a reality. Pediatr Res. 2017;81(1-2):140–1. 10.1038/pr.2016.22427901513
                    11Maxwell SE, Lau MY, Howard GS. Is psychology suffering from a replication crisis? What does “failure to replicate” really mean? Am Psychol. 2015;70(6):487–98. 10.1037/a003940026348332
                    12Malinowski AK, Ananth CV, Catalano P, Hines EP, Kirby RS, Klebanoff MA et al. ; PhenX Pregnancy Working Group. Research standardization tools: pregnancy measures in the PhenX Toolkit. Am J Obstet Gynecol. 2017;217(3):249–62. 10.1016/j.ajog.2017.05.05828578176
                    13Cook F, Conway LJ, Giallo R, Gartland D, Sciberras E, Brown S. Infant sleep and child mental health: a longitudinal investigation. Arch Dis Child. 2020;105(7):655–60. 10.1136/archdischild-2019-31801432152038
                    14Martin CA, Papadopoulos N, Chellew T, Rinehart NJ, Sciberras E. Associations between parenting stress, parent mental health and child sleep problems for children with ADHD and ASD: systematic review. Res Dev Disabil. 2019;93:103463. 10.1016/j.ridd.2019.10346331446370
                    15Baddam SK, Canapari CA, van Noordt SJ, Crowley MJ. Sleep disturbances in child and adolescent mental health disorders: a review of the variability of objective sleep markers. Med Sci (Basel). 2018;6(2):46. 10.3390/medsci602004629867064
                    16Armstrong JM, Ruttle PL, Klein MH, Essex MJ, Benca RM. Associations of child insomnia, sleep movement, and their persistence with mental health symptoms in childhood and adolescence. Sleep. 2014;37(5):901–9. 10.5665/sleep.365624790268
                    17Smaldone A, Honig JC, Byrne MW. Does assessing sleep inadequacy across its continuum inform associations with child and family health? J Pediatr Health Care. 2009;23(6):394–404. 10.1016/j.pedhc.2008.10.00619875027
                    18Li L, Zhang S, Huang Y, Chen K. Sleep duration and obesity in children: a systematic review and meta-analysis of prospective cohort studies. J Paediatr Child Health. 2017;53(4):378–85. 10.1111/jpc.1343428073179
                    19Van den Bergh BR, van den Heuvel MI, Lahti M, Braeken M, de Rooij SR, Entringer S et al. Prenatal developmental origins of behavior and mental health: the influence of maternal stress in pregnancy. Neurosci Biobehav Rev. 2020;117:26–64. 10.1016/j.neubiorev.2017.07.00328757456
                    20Becker M, Weinberger T, Chandy A, Schmukler S. Depression during pregnancy and postpartum. Curr Psychiatry Rep. 2016;18(3):32. 10.1007/s11920-016-0664-726879925
                    21Madigan S, Oatley H, Racine N, Fearon RM, Schumacher L, Akbari E et al. A meta-analysis of maternal prenatal depression and anxiety on child socioemotional development. J Am Acad Child Adolesc Psychiatry. 2018;57(9):645–657.e8. 10.1016/j.jaac.2018.06.01230196868
                    22Korja R, Nolvi S, Grant KA, McMahon C. The relations between maternal prenatal anxiety or stress and child’s early negative reactivity or self-regulation: a systematic review. Child Psychiatry Hum Dev. 2017;48(6):851–69. 10.1007/s10578-017-0709-028124273
                    23Gibson J, McKenzie-McHarg K, Shakespeare J, Price J, Gray R. A systematic review of studies validating the Edinburgh Postnatal Depression Scale in antepartum and postpartum women. Acta Psychiatr Scand. 2009;119(5):350–64. 10.1111/j.1600-0447.2009.01363.x19298573
                    24Derogatis LR, Lipman RS, Covi L. SCL-90: an outpatient psychiatric rating scale—preliminary report. Psychopharmacol Bull. 1973 Jan;9(1):13–28.4682398
                    25First MB, Williams JB, Karg RS, Spitzer RL. Structured Clinical Interview for DSM-5® Disorders-Clinician Version (SCID-5-CV). Washington (DC): American Psychiatric Association; 2015.
                    26Brunton RJ, Dryer R, Saliba A, Kohlhoff J. Pregnancy anxiety: a systematic review of current scales. J Affect Disord. 2015;176:24–34. 10.1016/j.jad.2015.01.03925687280
                    27Brunton RJ, Dryer R, Krägeloh C, Saliba A, Kohlhoff J, Medvedev O. The pregnancy-related anxiety scale: a validity examination using Rasch analysis. J Affect Disord. 2018;236:127–35. 10.1016/j.jad.2018.04.11629730512
                    28Fallon V, Halford JC, Bennett KM, Harrold JA. The Postpartum Specific Anxiety Scale: development and preliminary validation. Arch Women Ment Health. 2016;19(6):1079–90. 10.1007/s00737-016-0658-927571782
                    29Shorey S, Chee CY, Ng ED, Chan YH, Tam WW, Chong YS. Prevalence and incidence of postpartum depression among healthy mothers: a systematic review and meta-analysis. J Psychiatr Res. 2018;104:235–48. 10.1016/j.jpsychires.2018.08.00130114665
                    30Falah-Hassani K, Shiri R, Dennis CL. The prevalence of antenatal and postnatal co-morbid anxiety and depression: a meta-analysis. Psychol Med. 2017;47(12):2041–53. 10.1017/S003329171700061728414017
                    31Cameron EE, Sedov ID, Tomfohr-Madsen LM. Prevalence of paternal depression in pregnancy and the postpartum: an updated meta-analysis. J Affect Disord. 2016;206:189–203. 10.1016/j.jad.2016.07.04427475890
                    32Bosquet Enlow M, King L, Schreier HM, Howard JM, Rosenfield D, Ritz T et al. Maternal sensitivity and infant autonomic and endocrine stress responses. Early Hum Dev. 2014;90(7):377–85. 10.1016/j.earlhumdev.2014.04.00724794304
                    33Suglia SF, Enlow MB, Kullowatz A, Wright RJ. Maternal intimate partner violence and increased asthma incidence in children: buffering effects of supportive caregiving. Arch Pediatr Adolesc Med. 2009;163(3):244–50. 10.1001/archpediatrics.2008.55519255392
                    34Koehn AJ, Kerns KA. Parent-child attachment: meta-analysis of associations with parenting behaviors in middle childhood and adolescence. Attach Hum Dev. 2018;20(4):378–405. 10.1080/14616734.2017.140813129192551
                    35Pallini S, Chirumbolo A, Morelli M, Baiocco R, Laghi F, Eisenberg N. The relation of attachment security status to effortful self-regulation: a meta-analysis. Psychol Bull. 2018;144(5):501–31. 10.1037/bul000013429517260
                    36Spruit A, Goos L, Weenink N, Rodenburg R, Niemeyer H, Stams GJ et al. The relation between attachment and depression in children and adolescents: a multilevel meta-analysis. Clin Child Fam Psychol Rev. 2020;23(1):54–69. 10.1007/s10567-019-00299-931392452
                    37Vandell DL, Belsky J, Burchinal M, Steinberg L, Vandergrift N; NICHD Early Child Care Research Network. Do effects of early child care extend to age 15 years? Results from the NICHD study of early child care and youth development. Child Dev. 2010;81(3):737–56. 10.1111/j.1467-8624.2010.01431.x20573102
                    38Charrois J, Côté SM, Japel C, Séguin JR, Paquin S, Tremblay RE et al. Child-care quality moderates the association between maternal depression and children’s behavioural outcome. J Child Psychol Psychiatry. 2017;58(11):1210–8. 10.1111/jcpp.1276428677114
                    39Geoffroy MC, Côté SM, Parent S, Séguin JR. Daycare attendance, stress, and mental health. Can J Psychiatry. 2006;51(9):607–15. 10.1177/07067437060510090917007228
                    40Love JM, Harrison L, Sagi-Schwartz A, van IJzendoorn MH, Ross C, Ungerer JA et al. Child care quality matters: how conclusions may vary with context. Child Dev. 2003;74(4):1021–33. 10.1111/1467-8624.0058412938696
                    41Goldfeld S, Gray S, Azpitarte F, Cloney D, Mensah F, Redmond G et al. Driving precision policy responses to child health and developmental inequities. Health Equity. 2019;3(1):489–94. 10.1089/heq.2019.004531559378
                    42Braveman P, Barclay C. Health disparities beginning in childhood: a life-course perspective. Pediatrics. 2009;124 Suppl 3:S163–75. 10.1542/peds.2009-1100D19861467
                    43Beach SR, Ong ML, Lei MK, Klopack E, Carter SE, Simons RL et al. Childhood adversity is linked to adult health among African Americans via adolescent weight gain and effects are genetically moderated. Dev Psychopathol. 2021;33(3):803–20. 10.1017/S095457942000006132372728
                    44Johnson RC, Schoeni RF, Rogowski JA. Health disparities in mid-to-late life: the role of earlier life family and neighborhood socioeconomic conditions. Soc Sci Med. 2012;74(4):625–36. 10.1016/j.socscimed.2011.10.02122212443
                    45Sonu S, Post S, Feinglass J. Adverse childhood experiences and the onset of chronic disease in young adulthood. Prev Med. 2019;123:163–70. 10.1016/j.ypmed.2019.03.03230904602
                    46Kuhlman KR, Robles TF, Bower JE, Carroll JE. Screening for childhood adversity: the what and when of identifying individuals at risk for lifespan health disparities. J Behav Med. 2018;41(4):516–27. 10.1007/s10865-018-9921-z29603040
                    47Shonkoff JP, Boyce WT, McEwen BS. Neuroscience, molecular biology, and the childhood roots of health disparities: building a new framework for health promotion and disease prevention. JAMA. 2009;301(21):2252–9. 10.1001/jama.2009.75419491187
                    48Kravitz-Wirtz N. Cumulative effects of growing up in separate and unequal neighborhoods on racial disparities in self-rated health in early adulthood. J Health Soc Behav. 2016;57(4):453–70. 10.1177/002214651667156827799591
                    49Messer LC, Boone-Heinonen J, Mponwane L, Wallack L, Thornburg KL. Developmental programming: priming disease susceptibility for subsequent generations. Curr Epidemiol Rep. 2015;2(1):37–51. 10.1007/s40471-014-0033-126366336
                    50Umberson D, Williams K, Thomas PA, Liu H, Thomeer MB. Race, gender, and chains of disadvantage: childhood adversity, social relationships, and health. J Health Soc Behav. 2014;55(1):20–38. 10.1177/002214651452142624578394
                    51Appleton AA, Buka SL, McCormick MC, Koenen KC, Loucks EB, Kubzansky LD. The association between childhood emotional functioning and adulthood inflammation is modified by early-life socioeconomic status. Health Psychol. 2012;31(4):413–22. 10.1037/a002730022329424
                    52Roustit C, Campoy E, Renahy E, King G, Parizot I, Chauvin P. Family social environment in childhood and self-rated health in young adulthood. BMC Public Health. 2011;11(1):949. 10.1186/1471-2458-11-94922192716
                    53Johnson RC. Addressing racial health disparities: looking back to point the way forward. Ann Am Acad Pol Soc Sci. 2018;680(1):132–71. 10.1177/000271621879906131666746
                    54Almquist YM. Childhood friendships and adult health: findings from the Aberdeen Children of the 1950s Cohort study. Eur J Public Health. 2012;22(3):378–83. 10.1093/eurpub/ckr04521498559
                    55National Institutes of Health. Final NIH policy for data management and sharing. NOT-OD-21–013. 2020. https://grants.nih.gov/grants/guide/notice-files/NOT-OD-21-013.html
                    56Wilkinson MD, Dumontier M, Aalbersberg IJ, Appleton G, Axton M, Baak A et al. The FAIR Guiding Principles for scientific data management and stewardship. Sci Data. 2016;3(1):160018. 10.1038/sdata.2016.1826978244

                    Click cover to download publication

                    Keep Exploring

                    • icon-externallink-blue Created with Sketch.

                      The PhenX Toolkit

                    Contact

                    To contact an author or seek permission to use copyrighted content, contact our editorial team

                    • +1 919 541 6490
                    • rtipress@rti.org

                    Meet the Experts

                    View All Experts
                    Carol Hamilton

                    Carol M. Hamilton

                    Related Publications

                    View All Press
                    OCCASIONAL PAPER

                    Bringing an equity-centered framework to research

                    OCCASIONAL PAPER

                    Culturally informed community engagement

                    RESEARCH REPORT

                    Substance misuse prevention program attendance

                    RESEARCH BRIEF

                    COVID-19’s impact on clinical research

                    OCCASIONAL PAPER

                    Social determinants of health

                    OCCASIONAL PAPER

                    Challenges facing CAHPS surveys and opportunities for modernization

                    RESEARCH REPORT

                    Artificially intelligent social risk adjustment

                    OCCASIONAL PAPER

                    The need for a diverse environmental justice workforce

                    Recent Publications

                    View All Press
                    OCCASIONAL PAPER

                    Bringing an equity-centered framework to research

                    OCCASIONAL PAPER

                    The Preschool Entitlement

                    OCCASIONAL PAPER

                    Culturally informed community engagement

                    RESEARCH REPORT

                    Substance misuse prevention program attendance

                    RTI Logo
                    Partner With Us
                    • US Government
                    • Commercial
                    • Foundations & Associations
                    • Multilateral Donors
                    • Universities
                    • Suppliers
                    Site
                    • Privacy Policy
                    • Security Policy
                    • Site Map
                    • Terms of Use
                    • Accessibility
                    • Contact Us
                    Contact Us
                    Facebook Icon Twitter Icon Instagram Icon YouTube Icon Linkedin Icon
                    delivering the promise of science
                    for global good
                    RTI Health Solutions RTI Innovation Advisors RTI Health Advance

                    © 2023 RTI International. RTI International is a trade name of Research Triangle Institute. RTI and the RTI logo are U.S. registered trademarks of Research Triangle Institute.