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Sickle Cell Disease Core: Tier 1

Protocol Name PhenX Domain/Collection

National Health and Nutrition Examination Survey (NHANES), Laboratory procedures Manual, 2010
Rare Genetic Conditions

National Health and Nutrition Examination Survey (NHANES), 2005-2006
Demographics

U.S. Census Bureau, Census 2020, Questionnaire
Demographics

Cooperative Study of Sickle Cell Disease (CSSCD), Form 25 - Painful Episodes
Sickle Cell Disease: Core Tier 1

All of Us Research Program, Participant Provided Information (PPI), 2018
Demographics

National Health and Nutrition Examination Survey III (NHANES III), Body Measurements, 1988
Anthropometrics

National Health and Nutrition Examination Survey III (NHANES III), Body Measurements, 1988
Anthropometrics

National Health and Nutritional Examination Survey (NHANES) Weight History Questionnaire, 2007
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2007
Anthropometrics

The Laboratory Diagnosis of Haemoglobinopathies, 1998
Sickle Cell Disease: Core Tier 1

Telen, M.J., et al. Alloimmunization in sickle cell disease: changing antibody specificities and association with chronic pain and decreased survival. TRANSFUSION, 2015
Sickle Cell Disease: Core Tier 1

World Health Organization (WHO), Pulse oximetry training manual, 2011
Respiratory

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2007
Anthropometrics

National Health and Nutrition Examination Survey (NHANES), Anthropometry Procedures Manual, 2007
Anthropometrics
Scope of Collection
Element Considered Final Measures in Toolkit

Sickle Cell Disease Research and Scientific Panel Members

James R. Eckman, MD (Co-Chair)
Emory University
Atlanta, GA
Kathryn L. Hassell, MD (Co-Chair)
University of Colorado, Denver
Denver, CO
Kenneth I. Ataga, MD
University of North Carolina at Chapel Hill
Chapel Hill, NC
Jon A. Detterich, MD
Children's Hospital Los Angeles
Los Angeles, CA
Jeffrey Glassberg, MD
Mount Sinai Medical Center
New York, NY
Allison A. King, MD, MPH
Washington University School of Medicine
St. Louis, MO
Zora R. Rogers, MD
University of Texas, Southwestern
Dallas, TX
Kim Smith-Whitley, MD
Children's Hospital of Philadelphia
Philadelphia, PA
John J. Strouse, MD, PhD
Johns Hopkins University
Baltimore, MD
James Taylor, MD
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
Marilyn J. Telen, MD
Duke University
Durham, NC
Ellen M. Werner, PhD, MA
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
NIH National Heart, Lung and Blood Institute Liaisons
Susan M. Czajkowski, PhD
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
Joylene I. John-Sowah, MD, MPH
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
Michael M. Engelgau, MD, MS
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
Emmanuel K. Peprah, PhD
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
Harvey Luksenburg, MD
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
National Human Genome Research Institute (NHGRI) Liaisons
Vence L. Bonham, Jr., JD
National Human Genome Research Institute (NHGRI)
Bethesda, MD
Keisha Findley, PhD
National Human Genome Research Institute (NHGRI)
Bethesda, MD
National Cancer Institute (NCI) Liaison
Denise Stredrick, PhD
National Cancer Institute (NCI)
Rockville, MD
National Institute of Arthritis and Musculoskeletal and Skin Diseases Liaisons
Phil Tonkins Jr., DrPH
National Heart, Lung, and Blood Institute (NHLBI)
Bethesda, MD
James Witter, Md, PhD, FACR
National Institute of Arthritis and Musculoskeletal and
Skin Diseases (NIAMS)
Bethesda, MD
Eunice Kennedy Shriver National Institute of Child Health and Human Development Liaison
Tina Urv, PhD
Eunice Kennedy Shriver National Institute of Child Health and
Human Development (NICHD)
Rockville, MD
National Institute of Diabetes and Digestive and Kidney Diseases Liaison
Kevin Abbott, MD, MPH
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Bethesda, MD
National Institute on Minority Health and Health Disparities Liaison
Bridgett Rahim-Williams, PhD, MPH, MA
National Institute on Minority Health and Health Disparities (NIMHD)
Bethesda, MD
National Institute of Neurological Disorders and Stroke Liaison
Joanne C. Odenkirchen, MPH
National Institute of Neurological Disorders and Stroke (NINDS)
Rockville, MD
National Library of Medicine Liaisons
Clement J. McDonald, MD
National Library of Medicine (NLM)
Bethesda, MD
Jerry Sheehan, MS, BS
National Library of Medicine (NLM)
Bethesda, MD
Health Resources & Services Administration Liaison
Edward D. Ivy, MD, MPH
Health Resources & Services Administration
Rockville, MD
Centers for Disease Control and Prevention Liaison
Mike Soucie, PhD
Centers for Disease Control and Prevention
Atlanta, GA
RTI Management Team
Carol M. Hamilton, PhD (Principal Investigator)
RTI International
Research Triangle Park, NC
Tabitha P. Hendershot, BA (Co-Investigator)
RTI International
Washington, DC
Wayne Huggins, PhD (WG Supervisor)
RTI International
Research Triangle Park, NC
Tracey L. Grant, MS (WG Manager)
RTI International
Research Triangle Park, NC
Amanda Riley, PMP, MBA (Project Manager)
RTI International
Research Triangle Park, NC

Supplemental Information includes protocols that the Working Group or Expert Review Panel considered useful and highly relevant to the domain but do not meet the criteria for inclusion in the Toolkit.

Sickle Cell Disease Core Collections Supplemental Information includes:
Additional Information:

There is no additional information for this collection.