Appendix A
Agenda and List of Participants
AGENDA
| DAY 1: Thursday, January 18, 8:30 AM - 5:00 PM (NAS Lecture Room) | |
| 8:00-8:30 AM | Registration (East Court) |
| 8:30 | WELCOME AND INTRODUCTIONS |
| MODERATOR: Graham Colditz, Committee Chair, Washington University in St. Louis | |
|
8:35 Welcome to the National Academy of Sciences Brian Harris-Kojetin, Director, Committee on National Statistics, National Academies of Sciences, Engineering, and Medicine |
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8:45 Motivation and Objectives for the Workshop Robert T. Croyle, Director, Division of Cancer Control and Population Sciences, National Cancer Institute |
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| 9:00 | SESSION 1: What Do We Mean by Small Populations? |
| How to Decide When a Small Population Is Important or Meaningfully Different Enough to Study? | |
| MODERATOR: Graham Colditz, Committee Chair, Washington University in St. Louis | |
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9:05 Howard Koh, Harvard T.H. Chan School of Public Health, The Importance of Health Research on Small Populations |
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9:35 Scarlett Lin Gomez, University of California, San Francisco, Data Issues in Studying Small Populations: Challenges, Opportunities, and a Case Study |
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9:50 Lisa Signorello, Division of Cancer Prevention, National Cancer Institute, Fielding Studies in Underrepresented Populations: Challenges and Considerations |
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10:05 Floor Discussion |
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| 10:20 | BREAK |
| 10:40 | SESSION 2: Challenges in Using Available Data for Small Population Health Research |
| MODERATOR: Lance Waller, Committee Member, Emory University | |
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10:45 Kelly Devers, NORC, The Feasibility of Using Electronic Health Records and Electronic Health Data for Research on Small Populations |
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11:05 Chris Fowler, Pennsylvania State University, Using Geospatial Methods with Demographic Data to Identify Populations |
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11:25 Ellen Cromley, Consultant, Using Geospatial Methods with Other Health and Environmental Data to Identify Populations |
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11:45 Floor Discussion |
|
| 12:00 PM | LUNCH |
| 1:00 | SESSION 3: Techniques Used in Survey Research to Identify and Find Small Populations for Health Research |
| MODERATOR: Graham Kalton, Committee Member, Westat |
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1:05 Marc Elliott, RAND, Probability Sampling Methods for Small Populations |
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1:25 Sunghee Lee, University of Michigan, Two Applications of Respondent Driven Sampling: Ethnic Minorities and Illicit Substance Users |
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1:45 Patrick Sullivan, Emory University, Venue-Based and On-line Sampling |
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2:05 Krista Gile, University of Massachusetts Amherst, Invited Discussant |
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2:25 Floor Discussion |
|
| 2:45 | BREAK |
| 3:00 | SESSION 4: New and Emerging Designs for Intervention Studies |
| MODERATOR: James Allen, Committee Member, University of Minnesota Medical School | |
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3:05 Amy M. Kilbourne, University of Michigan, Designs for Dissemination and Implementation Research for Small Populations |
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3:35 Christine Lu, Harvard Medical School, Quasi-experimental Designs with Application to Small Populations |
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3:55 Diane Korngiebel, University of Washington, Addressing the Challenges of Research with Small Populations |
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4:15 Patrick H. Tolan, University of Virginia, Invited Discussant |
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4:35 Floor Discussion |
|
| 5:00 PM | ADJOURN |
| DAY 2: Friday, January 19, 8:30 AM - 2:00 PM (NAS Lecture Room) | |
| 8:30 AM | Welcome to Day 2 |
| MODERATOR: Graham Colditz, Committee Chair, Washington University in St. Louis | |
|
8:40 SESSION 5: Recruitment, Retention, and Collection of Data with a Focus on Small or Hard to Reach Populations |
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8:45 Vetta Sanders Thompson, Washington University in St. Louis, Issues and Challenges Associated with Recruitment and Retention for Health Research |
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9:05 F. Douglas Scutchfield, University of Kentucky, Improving Health Research in Rural Areas |
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9:25 Kathi Mooney, University of Utah, Using Technology for Recruitment, Retention, Data Collection, and Intervention Delivery |
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9:45 Tracy L. Onega, Dartmouth College, Invited Discussant |
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10:05 Floor Discussion |
|
| 10:20 | BREAK |
| 10:40 | SESSION 6: Analysis Techniques for Small Population Research |
| MODERATOR: Lance Waller, Committee Member, Emory University | |
|
10:45 Rick H. Hoyle, Duke University, Design and Analysis Considerations in Research with Small Samples |
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11:05 Thomas A. Louis, Johns Hopkins Bloomberg School of Public Health, Bayesian Methods for Small Population Analysis |
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11:25 Katherine R. McLaughlin, Oregon State University, Estimating the Size of Hidden Populations |
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11:45 Floor Discussion |
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| 12:00 PM | LUNCH |
| 1:00 | SESSION 7: Wrap-up and Concluding Remarks |
| MODERATOR: Gordon Willis, National Cancer Institute | |
|
1:00 Steering Committee, Panel Discussion—Next Steps in Improving Health Research for Small Populations |
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1:30 Floor Discussion |
|
| 2:00 PM | ADJOURN |
PARTICIPANT LIST
Steering Committee Members
Graham Colditz (Chair), Niess-Gain Professor of Surgery, Washington University School of Medicine
James Allen, Professor, Department of Biobehavioral Health and Population Sciences, University of Minnesota Medical School
Graham Kalton, Chairman and Senior Vice President, Westat
Janice Probst, Professor, Department of Health Services Policy and Management, University of South Carolina, Arnold School of Public Health
Lance Waller, Rollins Professor and Chair, Department of Biostatistics and Bioinformatics, Emory University, Rollins School of Public Health
Sponsors
David Berrigan, Program Director, Behavioral Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute (NCI), National Institutes of Health (NIH)
Robert Croyle, Director, Division of Cancer Control and Population Sciences, NCI, NIH
Rina Das, Program Director, Division of Extramural Scientific Programs, National Institute on Minority Health and Health Disparities (NIMHD), NIH
Richard Moser, Training Director, Division of Cancer Control and Population Sciences, NCI, NIH
Alonzo Plough, Vice President, Research Evaluation Learning and Chief Science Officer, Robert Wood Johnson Foundation
Shobha Srinivasan, Health Disparities Research Coordinator, NCI, NIH
Gordon Willis, Program Director, Behavioral Research Program, Division of Cancer Control and Population Sciences, NCI, NIH
Presenters
Ellen Cromley, Consultant, Washington State
Kelly Devers, Senior Fellow, Health Care, NORC at the University of Chicago
Marc Elliott, Senior Principal Researcher, RAND Corporation
Chris Fowler, Assistant Professor of Geography and Demography, Pennsylvania State University
Krista Gile, Associate Professor, Department of Mathematics and Statistics, University of Massachusetts
Scarlett Lin Gomez, Adjunct Professor, University of California, San Francisco School of Medicine
Rick Hoyle, Professor, Department of Psychology and Neuroscience, Duke University
Amy Kilbourne, Professor, Institute for Healthcare Policy and Innovation, University of Michigan
Howard Koh, Harvey V. Fineberg Professor of the Practice of Public Health Leadership, Harvard T.H. Chan School of Public Health
Diane Korngiebel, Assistant Professor, Department of Biomedical Informatics and Medical Education, University of Washington
Sunghee Lee, Associate Research Scientist, Institute for Social Research, University of Michigan
Tom Louis, Professor, Department of Biostatistics, Johns Hopkins Bloomberg School of Public Health
Christine Lu, Associate Professor of Population Medicine, Harvard Medical School
Katherine McLaughlin, Assistant Professor of Statistics, Oregon State University
Kathi Mooney, Distinguished Professor, University of Utah College of Nursing
Tracy Onega, Associate Professor, Department of Biomedical Data Science; Epidemiology; and The Dartmouth Institute for Health Policy & Clinical Practice, Dartmouth College
F. Douglas Scutchfield, University of Kentucky College of Public Health
Lisa Signorello, Senior Biomedical Scientist, NCI, NIH
Patrick Sullivan, Rollins School of Public Health, Emory University
Vetta Sanders Thompson, Professor, Brown School, Washington University in St. Louis
Patrick H. Tolan, Director Emeritus, Youth-Nex Center, The UVA Center to Promote Effective Youth Development
Guests
Alaba Oluwatoyin Adedoyin, Industrial Program Officer, Obafemi Awolowo University, Nigeria
Brenda Adjei, Program Director, NCI (joining via Webinar)
Jennifer Alvidrez, Program Official, Division of Scientific Programs, NIMHD, NIH (joining via Webinar)
Sean Arayasirikul, Assistant Professor, Division of Developmental Medicine, Department of Pediatrics, School of Medicine, University of California, San Francisco (joining via Webinar)
Jessica Athens, Assistant Professor, Department of Population Health, New York University (NYU) School of Medicine
Kellan Baker, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health
Christopher Barnhart, AAAS Science and Technology Policy Fellow, Health Scientist, NIH Office of the Director (joining via Webinar)
Annie Beach, Research Fellow, Division of Cancer Control and Population Sciences, NCI, NIH
Inna Belfer, Health Scientist Administrator/Project Officer, Office of Research on Women’s Health (ORWH), HHS/NIH/OD/DPCPSI (joining via Webinar)
Kara Bensley, Postdoctoral Research Fellow, University of California, Berkeley, Associate Scientist, Alcohol Research Group (joining via Webinar)
Lew Berman, Vice President, Social and Analytic Solutions, Maryland
Sarah Bruce Bernal, Implementation Science Team, Division of Cancer Control and Population Sciences, NCI, NIH
Obasanjo Bolarinwa, Postgraduate, Obafemi Awolowo University, Nigeria (joining via Webinar)
Cheryl Boyce, Chief, Implementation Science Branch, Center for Translation Research and Implementation Science, National Heart, Lung, and Blood Institute (NHLBI), NIH, Department of Health and Human Services (HHS) (joining via Webinar)
Abee Boyles, Population Health Branch, Division of Extramural Research & Training, National Institute of Environmental Health Sciences (NIEHS), NIH (joining via Webinar)
Kathryn Brignole, Cancer Research Training Award Fellow, Genomic Epidemiology Branch, Epidemiology and Genomics Research Program, Division of Cancer Control and Population Sciences, NCI, NIH
Victoria Cargill, Medical Officer, Associate Director, Interdisciplinary Research, Office of Research on Women’s Health, NIH (joining via Webinar)
Dorothy Castille, Health Scientist Administrator, NIMHD, NIH
Liza Catucci, Administrative Officer, Health Services Research and Development, Department of Veterans Affairs
Christine Chang, Scientific Program Coordinator, National Human Genome Research Institute (NHGRI), NIH (joining via Webinar)
Anita Cheung, Johns Hopkins University (joining via Webinar)
Dietta Chihade, Mirzayan Fellow, National Academies of Sciences, Engineering, and Medicine
Juanita Chinn, Program Director, Population Dynamics Branch, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), NIH
Sarah Conderino, Surveillance Data Scientist, Department of Population Health, NYU School of Medicine
Allison Cook, Program Specialist, NCI, NIH
Danielle Daee, Program Director, Division of Cancer Control and Population Sciences, NCI, NIH (joining via Webinar)
Jyoti Dayal, Program Officer, NHGRI, NIH (joining via Webinar)
Roberto Delgado, National Institute of Mental Health, NIH
Christina N. Dragon, Statistician, Office of Minority Health, Centers for Medicare & Medicaid Services (CMS)
Kevin English, Director, Albuquerque Area Southwest Tribal Epidemiology Center (AASTEC), Albuquerque Area Indian Health Board, Inc. (AAIHB) (joining via Webinar)
Sarah Fagan, Fellow, Division of Cancer Control and Population Sciences, NCI, NIH
Angela Falisi, Program Specialist, Division of Cancer Control and Population Sciences, NCI, NIH (joining via Webinar)
Margaret Farrell, Public Health Adviser, Division of Cancer Control and Population Sciences, NCI, NIH
Jessica Fish, Postdoctoral Fellow, Population Research Center, University of Texas at Austin (joining via Webinar)
Eleanor Fleming, Dental Public Health Resident, Boston University
Gonçalo Forjaz de Lacerda, Guest Researcher, Data Analytics Branch, NCI, NIH
Lisa Gallicchio, Program Director, Division of Cancer Control and Population Sciences, NCI, NIH
Silvia Garvey, Scientific Program Specialist, Division of Genomic Medicine, NHGRI, NIH (joining via Webinar)
Elizabeth Gillanders, Branch Chief, Division of Cancer Control and Population Sciences, NCI, NIH (joining via Webinar)
Kimberly Ann Gray, Program Director, Children’s Environmental Health, Population Health Branch, Division of Extramural Research and Training, NIEHS, NIH
Michaela Gross, Research Assistant, University of South Florida (joining via Webinar)
Paul Guerino, Statistician and Poverty Data Lead, Office of Minority Health, CMS (joining via Webinar)
Elina Guralnik, Health Consultant, George Mason University
Craig Hales, Division of Health and Nutrition Examination Surveys, National Center for Health Statistics, Centers for Disease Control and Prevention (CDC)
Emily Haozous, Associate Professor, Regent’s Professor, University of New Mexico College of Nursing (joining via Webinar)
Jody L. Herman, Scholar of Public Policy, Williams Institute, UCLA School of Law (joining via Webinar)
Kelly Hirko, Assistant Professor, Department of Epidemiology & Biostatistics, College of Human Medicine, Michigan State University (joining via Webinar)
Kristen Hudgins, Social Science Analyst, Office of Performance and Evaluation, Department of Health and Human Services
Genevieve Hugenbruch, Graduate Research Assistant, Maryland Department of Health (joining via Webinar)
Chandra Jackson, Earl Stadtman Investigator, Epidemiology Branch, Social and Environmental Determinants of Health Equity, NIEHS, NIH (joining via Webinar)
Aimee James, Associate Professor and T32 Training Director, Division of Public Health Sciences–Department of Surgery, Washington University School of Medicine
Anuradha Jetty, Research Associate, Robert Graham Center for Policy Studies in Family Medicine and Primary Care, American Academy of Family Physicians
Bonnie Joubert, Program Director, Population Health Branch, Division of Extramural Research and Training, NIEHS, NIH (joining via Webinar)
Edmund Keane, Health Science Policy Analyst, Tribal Health Research Office, NIH
Amy Kennedy, Center for Research Strategy, NCI, NIH
Min Kim, Senior Program Specialist, Office of Minority Health and Health Disparities, Maryland Department of Health (joining via Webinar)
Imke Kirste, Study Manager, NIEHS Clinical Research Unit, NIH (joining via Webinar)
Lisa Klesges, Senior Adviser, Implementation Science and Public Health (Consultant), Division of Cancer Control and Population Sciences, NCI, NIH
Sarah Kobrin, Chief (acting), Health Systems and Interventions Research Branch, NCI, NIH
Julie Kranick, Center for the Study of Asian American Health, NYU School of Medicine (joining via Webinar)
Poorna Kushalnagar, Director, Deaf Health Communication and Quality of Life Research Lab, Gallaudet University (joining via Webinar)
Bryan Kutner, Postdoctoral Research Fellow, HIV Center for Clinical and Behavioral Studies at the NY State Psychiatric Institute and Columbia University (joining via Webinar)
Simona Kwon, Assistant Professor, NYU School of Medicine, (joining via Webinar)
Karen Lee, Medical Officer, Director, Behavioral Pediatrics and Health Promotion Program, Child Development and Behavior Branch, NICHD, NIH (joining via Webinar)
Eugene Lengerich, Professor of Public Health Sciences, Pennsylvania State University
Alicia LePard, Acute Care Nurse Practitioner, High Desert Healthcare, LLC, Wyoming (joining via Webinar)
Benmei Liu, Mathematical Statistician and Program Director, Division of Cancer Control and Population Sciences, NCI, NIH
Ryan Mahon, Program Analyst (Contractor), Division of Program Coordination, Planning, and Strategic Initiatives, Office of the Director, NIH (joining via Webinar)
Andrea Horvath Marques, Chief, Office for Research on Disparities and Global Mental Health, National Institute of Mental Health, NIH
Heather Menne, Social Science Analyst, Office of Performance and Evaluation, Center for Policy and Evaluation, Administration for Community Living, Department of Health and Human Services (joining via Webinar)
Nancy Miller, Senior Adviser to the Associate Director, Division of Cancer Control and Population Sciences, NCI, NIH (joining via Webinar)
Shabab Ahmed Mirza, Research Assistant, LGBT Progress, Center for American Progress (joining via Webinar)
Florence Momplaisir, Assistant Professor, Drexel University College of Medicine (joining via Webinar)
Jennifer Moss, Cancer Research Fellow, Division of Cancer Control and Population Sciences, NCI, NIH (joining via Webinar)
Arnab Mukherjea, Assistant Professor of Health Sciences, California State University, East Bay
Amy Napoles, NIMHD
Hervette Nkwihoreze, Research Assistant, Drexel University College of Medicine (joining via Webinar)
Angele Nyinawingabo, Research Assistant, Drexel University College of Medicine (joining via Webinar)
Chris Obermeyer, Fulbright Public Policy Fellow, Ministry of Health of Ukraine (joining via Webinar)
Ayokunle Omoniyi, Program Officer, Huklyn Global Fund, Nigeria
Karen Parker, Director, Sexual and Gender Minority Research Office, Division of Program Coordination, Planning, and Strategic Initiatives, Office of the Director, NIH (joining via Webinar)
Dolly Penn, Medical Officer, Healthcare Assessment Research Branch, Healthcare Delivery Research Program, Division of Cancer Control and Population Sciences, NCI, NIH (joining via Webinar)
Antoinette Percy-Laurry, Health Scientist, Implementation Science, Division of Cancer Control and Population Sciences, NCI, NIH (joining via Webinar)
Mackenzi Pergolotti, Assistant Professor, Department of Occupational Therapy, Colorado State University (joining via Webinar)
Courtney Pinard, Senior Research Scientist, Center for Nutrition, Nebraska (joining via Webinar)
Stephanie Jilcott Pitts, Associate Professor, Department of Public Health, East Carolina University
Mandi Pratt-Chapman, Associate Center Director, Patient-Centered Initiatives and Health Equity, George Washington Cancer Center
Mona Puggal, Division of Cardiovascular Sciences, NHLBI, NIH (joining via Webinar)
Gita Rampersad, Strategic Engagement Consultant, Healthcare Ready, Washington, DC (joining via Webinar)
Jennifer Rankin, Senior Manager, Research and Product Services, American Academy of Family Physicians, Washington, DC
Sarah E. Raskin, Assistant Professor, iCubed Initiative, Oral Health Core, L. Douglas Wilder School of Government and Public Affairs, Virginia Commonwealth University
Nicole Redmond, Medical Officer, Division of Cardiovascular Sciences, NIH
Mary Roary, Program Director, Division of Extramural Science Programs, National Institute of Nursing Research, NIH (joining via Webinar)
Carol Robbins, Public Health Analyst, Office of Planning, Analysis and Evaluation, Health Resources and Services Administration
Megan Roberts, Division of Cancer Control and Population Sciences, NCI, NIH
Eduardo Romano, Senior Research Scientist, Pacific Institute for Research and Evaluation, (joining via Webinar)
Adelaida Rosario, Health Specialist, NIMHD, NIH
Sonia Rosenfield, Center for Research Strategy, National Institute on Alcohol Abuse and Alcoholism, NIH
Melissa Rotunno, Program Director, Division of Cancer Control and Population Sciences, NCI, NIH (joining via Webinar)
Stefanie Russell, Associate Professor, Department of Epidemiology & Health Promotion, NYU College of Dentistry
Zeina Saliba, Assistant Professor, George Washington University (joining via Webinar)
Ramzi Salloum, Assistant Professor, Health Outcomes and Policy, University of Florida
Parth Saraiya, MPH student, George Washington University (joining via Webinar)
Ayden Scheim, Division of Infectious Diseases and Global Public Health, School of Medicine, University of California, San Diego (joining via Webinar)
Marcia Scott, Division of Epidemiology and Prevention Research, National Institute on Alcohol Abuse and Alcoholism, NIH (joining via Webinar)
Katrina Serrano, Health Scientist Administrator/Program Officer, Interdisciplinary Research, ORWH, Division of Program Coordination, Planning, and Strategic Initiatives, Office of the Director, NIH (joining via Webinar)
Betsy Shenkman, Associate Director, Population Sciences, Health Cancer Center, University of Florida
Lisa Shook, Assistant Professor of Pediatrics, Administrative Director, Cincinnati Comprehensive Sickle Cell Center (joining via Webinar)
Monica Sierra, Division of Cancer Prevention and Control, CDC (joining via Webinar)
Alena Smith, Graduate Student (joining via Webinar)
Michael Spittel, NIH (joining via Webinar)
David Stinchcomb, Westat, Maryland
Denise Stredrick, Health Scientist Administrator/Project Officer, ORWH, HHS/NIH/OD/DPCPSI (joining via Webinar)
Eward Strickler, School of Medicine, University of Virginia (joining via Webinar)
Jariah Strozier, Doctoral Student, Certified Health Education Specialist, Adviser of Black Organizations Council, Department of Sociology, Virginia Tech (joining via Webinar)
L. Jospeh Su, Department of Epidemiology, University of Arkansas for Medical Sciences (joining via Webinar)
Bob Sun, Fellow, NIEHS, NIH
Megan Sutter, Postdoctoral Research Fellow, Moffitt Cancer Center, Florida (joining via Webinar)
Catherine Tallant, Doctoral Candidate, Florida School of Professional Psychology at Argosy University (joining via Webinar)
Kosuke Tamura, Postdoctoral Fellow, NHLBI, NIH
Caitlin Turner, Data Manager, Center for Public Health Research, San Francisco Department of Public Health (joining via Webinar)
Kathleene Ulanday, Predoctoral Student, Graduate Research Assistant, Department of Epidemiology, Mailman School of Public Health, Columbia University
Robin Vanderpool, Associate Professor, Department of Health, Behavior & Society, University of Kentucky College of Public Health (joining via Webinar)
Cindy Veldhuis, Ruth Kirschstein Postdoctoral Research Fellow, School of Nursing, Columbia University (joining via Webinar)
Amy Veney, Lecturer, Kent State University, College of Nursing
Ed Villalaz (joining via Webinar)
Cynthia Vinson, Senior Adviser for Implementation Science, Implementation Science Team, Division of Cancer Control and Population Sciences, NCI, NIH (joining via Webinar)
Caroline Voyles, Director, Student Placement & Partnership Development, Dornsife School of Public Health, Drexel University (joining via Webinar)
Paul Wesson, Postdoctoral Fellow, Center for AIDS Prevention Studies, University of California, San Francisco (joining via Webinar)
Chris Wheldon, Cancer Prevention Fellow, National Cancer Institute
Jamie White, Presidential Management Fellow—STEM (Special Assistant), ORWH, NIH
David Wilson, Director, Tribal Health Research Office, NIH
Andrea Wirtz, Assistant Scientist, Johns Hopkins Bloomberg School of Public Health
Diana Withrow, Postdoctoral Fellow, Division of Cancer Epidemiology and Genetics, NCI, NIH
Behailu Woldegiorgis, Researcher, Ethiopia
Laura Wyatt, Research Data Manager, Section for Health Equity, Department of Population Health, NYU School of Medicine (joining via Webinar)
Jessica Xavier, Health Scientist, HRSA/HAB/OTCD/DEB
Sheldwin Yazzie, Exposure Scientist/Epidemiologist, AASTEC, Albuquerque, New Mexico
Melanie Young, Biological Scientist, U.S. Environmental Protection Agency
Mandi Yu, Surveillance Research Program, Division of Cancer Control and Population Sciences, NCI, NIH (joining via Webinar)
Xingyou Zhang, Senior Mathematical Statistician, Economic Research Service
National Academies of Sciences, Engineering, and Medicine Staff
Hermann Habermann, Senior Program Officer, Committee on National Statistics
Brian Harris-Kojetin, Director, Committee on National Statistics
Nancy Kirkendall, Study Director, Committee on National Statistics
Anthony Mann, Program Coordinator, Committee on National Statistics
Sharyl Nass, Board Director, Health and Medicine Division
Jordyn White, Program Officer, Committee on National Statistics
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