The National
Children’s Study 2014

AN ASSESSMENT

Panel on the Design of the National Children’s Study and Implications for the Generalizability of Results

Greg J. Duncan, Nancy J. Kirkendall, and Constance F. Citro, Editors

Committee on National Statistics

Division of Behavioral and Social Sciences and Education

Board on Children, Youth, and Families

Institute of Medicine

NATIONAL RESEARCH COUNCIL AND
                         INSTITUTE OF MEDICINE

THE NATIONAL ACADEMIES PRESS

Washington, D.C.

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The National Children’s Study 2014 AN ASSESSMENT Panel on the Design of the National Children’s Study and Implications for the Generalizability of Results Greg J. Duncan, Nancy J. Kirkendall, and Constance F. Citro, Editors Committee on National Statistics Division of Behavioral and Social Sciences and Education Board on Children, Youth, and Families Institute of Medicine

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THE NATIONAL ACADEMIES PRESS  500 Fifth Street, NW  Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This study was supported by Contract/Grant No. HHSN263000025 between the National Academy of Sciences and the Department of Health and Human Services. Support of the work of the Committee on National Statistics is provided by a consor- tium of federal agencies through a grant from the National Science Foundation (No. SES-1024012). Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project. International Standard Book Number-13:  978-0-309-30689-0 International Standard Book Number-10:  0-309-30689-2 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242; http://www.nap. edu. Copyright 2014 by the National Academy of Sciences. All rights reserved. Printed in the United States of America. Suggested citation: National Research Council and Institute of Medicine. (2014). The National Children’s Study 2014: An Assessment. Panel on the Design of the National Children’s Study and Implications for the Generalizability of Results, G.J. Duncan, N.J. Kirkendall, and C.F. Citro (Eds). Committee on National Statistics, Division of Behav- ioral and Social Sciences and Education, and Board on Children, Youth, and Families, Institute of Medicine. Washington, DC: The National Academies Press.

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The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. C. D. Mote, Jr., is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examina- tion of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Victor J. Dzau is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. C. D. Mote, Jr., are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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PANEL ON THE DESIGN OF THE NATIONAL CHILDREN’S STUDY AND IMPLICATIONS FOR THE GENERALIZABILITY OF RESULTS Greg J. Duncan (Chair), School of Education, University of California, Irvine Dean B. Baker, Division of Occupational and Environmental Medicine, School of Medicine, University of California, Irvine Paul P. Biemer, RTI International, Research Triangle Park, Raleigh, NC, and University of North Carolina at Chapel Hill Barbara Lepidus Carlson, Mathematica Policy Research, Cambridge, MA Ana V. Diez-Roux, School of Public Health, Drexel University Virginia M. Lesser, Department of Statistics, Oregon State University Marie C. McCormick, Department of Social and Behavioral Sciences, Harvard School of Public Health Sara S. McLanahan, Department of Sociology and Woodrow Wilson School of Public and International Affairs, Princeton University George R. Saade, University of Texas Medical Branch, Galveston S. Lynne Stokes, Department of Statistical Sciences, Southern Methodist University Leonardo Trasande, Departments of Population Health, Environmental Medicine, and Pediatrics, New York University Langone Medical Center Nancy J. Kirkendall, Study Director Agnes E. Gaskin, Administrative Assistant v

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COMMITTEE ON NATIONAL STATISTICS 2013-2014 Lawrence D. Brown (Chair), Department of Statistics, The Wharton School, University of Pennsylvania John M. Abowd, School of Industrial and Labor Relations, Cornell University Mary Ellen Bock, Department of Statistics, Purdue University David Card, Department of Economics, University of California, Berkeley Alicia Carriquiry, Department of Statistics, Iowa State University Michael E. Chernew, Department of Health Care Policy, Harvard Medical School Constantine Gatsonis, Center for Statistical Sciences, Brown University James S. House, Survey Research Center, Institute for Social Research, University of Michigan Michael Hout, Department of Sociology, New York University Sallie Keller, Virginia Bioinformatics Institute at Virginia Tech, Arlington Lisa Lynch, The Heller School for Social Policy and Management, Brandeis University Colm O’Muircheartaigh, Harris School of Public Policy Studies, University of Chicago Ruth Peterson, Criminal Justice Research Center, Ohio State University Edward H. Shortliffe, Department of Biomedical Informatics, Columbia University, and Department of Biomedical Informatics, Mayo Clinic Campus of Arizona State University Hal Stern, Donald Bren School of Information and Computer Sciences, University of California, Irvine Constance F. Citro, Director Jacqueline R. Sovde, Program Coordinator vi

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BOARD ON CHILDREN, YOUTH, AND FAMILIES Angela Diaz (Chair),Departments of Pediatrics and Preventive Medicine, Icahn School of Medicine at Mount Sinai, New York Shari Barkin, Monroe Carell Jr. Children’s Hospital, Vanderbilt University Thomas F. Boat, College of Medicine, University of Cincinnati W. Thomas Boyce, Faculty of Medicine, University of British Columbia David A. Brent, Western Psychiatric Institute and University of Pittsburgh School of Medicine David V.B. Britt, Leadership Development Consultant, Amelia Island, FL Debbie I. Chang, Nemours Health and Prevention Services, Newark, DE Janet M. Currie, Woodrow Wilson School of Public and International Affairs, Princeton University Patrick H. DeLeon, F. Edward Hebert School of Medicine and the Graduate School of Nursing, Uniformed Services University of the Health Sciences, Bethesda, MD Gary W. Evans, Department of Design and Environmental Analysis and Department of Human Development, Cornell University Elena Fuentes-Afflick, Department of Pediatrics, University of California, San Francisco, and San Francisco General Hospital Eugene E. Garcia, Mary Lou Fulton Teachers’ College, Arizona State University J. David Hawkins, School of Social Work, University of Washington Jeffrey W. Hutchinson, Uniformed Services University of the Health Sciences, Bethesda, MD Jacqueline Jones, Educational Research Consultant, Princeton, NJ Ann S. Masten, Institute of Child Development, University of Minnesota Velma McBride Murry, Peabody College, Vanderbilt University Bruce S. McEwen, Harold and Margaret Milliken Hatch Laboratory of Neuroendocrinology, The Rockefeller University Pamela Morris,The Steinhardt School of Culture, Education, and Human Development, New York University Taha E. Taha, Bloomberg School of Public Health, Johns Hopkins University Kimber Bogard, Board Director vii

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Acknowledgments T he Panel on the Design of the National Children’s Study and Implica- tions for the Generalizability of Results thanks the many people and organizations that contributed to the preparation of this report. Without their help, the panel could not have completed its work within the short time frame of the study. As chair, I first thank my fellow panel members for their commitment to the work under a demanding time schedule. They have consis- tently provided insightful and constructive input under tight deadlines as we developed this report. The panel thanks Steven Hirschfeld and Jennifer Kwan of the Program Office of the National Children’s Study (NCS), at the U.S. Department of Health and Human Services, for their collegial interactions with the panel and their responses to our many questions. The panel also thanks its expert cost consultants, Randall Olsen of Ohio State University and Lisa Schwartz of Mathematica Policy Research, whose input on the cost model and related topics considered by the panel made a significant contribution to our work. The panel also thanks Nicole C. Deziel of Yale University for elaborating on her discussion of environmental measures at the National Research Council/ Institute of Medicine Workshop on the Design of the National Children’s Study in January 2013.The panel also thanks Kate H. Choi, of Princeton University, for her fertility tabulations. We very much appreciate the input from and thank the representatives of outside organizations who spoke with the panel at our open meetings: Virginia Delaney-Black, of the Children’s Hospital of Michigan, who spoke on behalf of a large number of former NCS Vanguard principal investigators; Jaqueline ix

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x ACKNOWLEDGMENTS Mosby, director of the Office of Children’s Health Research of the U.S. Envi- ronmental Protection Agency; James Perrin, president of the Academy of Pedi- atrics; and Cynthia Bearer of the Children’s Environmental Health Network. The panel has been assisted by an able staff: Nancy Kirkendall, our study director, who facilitated panel activities and guided the panel on reaching con- clusions and writing its report; Agnes Gaskin, who made all arrangements and managed logistics for the panel; and Connie Citro, director of the Committee on National Statistics, whose insights, detailed knowledge, and wise council were invaluable to the panel in its work. This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with proce- dures approved by the Report Review Committee of the National Research Council. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Cynthia F. Bearer, Department of Pediatrics, University of Maryland Hospital for Children; Barbara D. Boyan, School of Engineering, Virginia Commonwealth University; Manning Feinleib, Bloomberg School of Public Health, Johns Hopkins University; Stephen E. Fienberg, Department of Statistics, Carnegie Mellon University; Lynn R. Goldman, Milken Insti- tute School of Public Health, George Washington University; Heather Joshi, Institute of Education, Centre for Longitudinal Studies, London; Roderick J.A. Little, Department of Biostatistics, School of Public Health, University of Michigan; Colm A. O’Muircheartaigh, Harris School of Public Policy Studies, University of Chicago; Nigel Paneth, Departments of Epidemiology and Biosta- tistics and Pediatrics and Human Development, College of Human Medicine, Michigan State University; and Thomas S. Weisner, Department of Anthropol- ogy, Department of Psychiatry and Biobehavioral Sciences, and Center for Culture and Health, University of California, Los Angeles. Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Janet Currie, Center for Health and Well-Being, Woodrow Wilson School of Public and International Affairs, Princeton University, and Johanna T. Dwyer, School of Medicine, Frances Stern Nutrition Center, Tufts Medical Center, and Office of Dietary Supplements, National Institutes of Health. Appointed by the National Research Council, they were responsible for ensuring that an independent examination of this report was carried out in accordance with institutional procedures and that all

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ACKNOWLEDGMENTS xi review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution. Finally, we recognize the many federal agencies that support the Committee on National Statistics directly and through a grant from the National Science Foundation. Without their support and their commitment to improving the national statistical system, the panel’s work that is the basis of this report would not have been possible. Greg J. Duncan, Chair Panel on the Design of the National Children’s Study and Implications for the Generalizability of Results

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Contents SUMMARY 1 1 INTRODUCTION 11 Charge to the Panel, 11 History of the NCS, 14 Proposed Design of the Main Study, 22 This Panel’s Approach, 23 Organization of the Report, 25 2 STUDY DESIGN 27 The Panel’s Conceptual Framework, 27 Design Principles, 29 Key Design Features, 30 Supplemental Samples, 37 Health Disparities, 42 3 SAMPLE DESIGN 45 Proposed Sample Design, 45 Expected Elements in a Sampling Plan, 48 Evaluation of the NCS Sampling Plan, 50 Next Steps for the Sample Design, 67 xiii

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xiv CONTENTS 4 STUDY CONTENT 71 Study Content Concepts and Parameters, 71 Proposed Data Collection, 78 Health Disparities, 93 Data Release, 94 5 DATA COLLECTION COSTS 99 Assumptions, 99 Cost Drivers, 100 Field Cost Estimates: Alternative Models, 101 Evaluation, 105 6 STUDY LEADERSHIP AND SCIENTIFIC OVERSIGHT 107 Areas of Concern, 107 Approaches to Consider, 111 Lessons from Other Studies, 114 7 SUMMARY, CONCLUSIONS, AND RECOMMENDATIONS 115 Conceptual Framework and Implications for Design, 116 Probability Sample Design, Size, and Composition, 120 Content and Visit Schedule, 123 Field Costs, 126 Leadership of the National Children’s Study, 127 REFERENCES: GENERAL 129 REFERENCES: NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT 133 APPENDIXES A Communications between the Panel and the NCS Program Office 135 B Field Costs for the National Children’s Study: First 7 Years 145 C Biographical Sketches of Panel Members and Staff 161