SCD Core: Tier 1

Release Date:

July 30, 2015

Scope of Collection

Element Considered	Final Measures in Toolkit

Sickle Cell Disease Research and Scientific Panel Members (2015)

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 Duke University Durham, NC	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

Sickle Cell Disease Research and Scientific Panel Members (2019)

Sickle Cell Disease Research and Scientific Panel (SRSP) Members

James R. Eckman, MD (Co-Chair) Emory University Atlanta, GA	John J. Strouse, MD, PhD (Co-Chair) Duke University Durham, NC
Lakshmanan Krishnamurti, MD Emory University Atlanta, GA	Sophie Lanzkron, MD Johns Hopkins University Baltimore, MD
Marsha J. Treadwell, PhD Children's Hospital Oakland Research Institute Oakland, CA

RTI Management Team

Carol M. Hamilton, PhD (Principal Investigator) RTI International Research Triangle Park, NC	Deborah Maiese, MPA RTI International Research Triangle Park, NC
Lisa Gehtland, MD RTI International Research Triangle Park, NC	Tabitha P. Hendershot, BA (Co-Investigator) RTI International Washington, DC
Wayne Huggins, PhD RTI International Research Triangle Park, NC	Cindy Changar, (Project Manager) RTI International Berkeley, CA

NIH National Heart, Lung and Blood Institute

Phil Tonkins Jr., DrPH National Heart, Lung, and Blood Institute (NHLBI) Bethesda, MD

National Human Genome Research Institute (NHGRI)

Erin M. Ramos, PhD, MPH National Human Genome Research Institute (NHGRI) Bethesda, MD	Madison Goldrich, National Human Genome Research Institute (NHGRI) Bethesda, MD
Jyoti Dayal, MS National Human Genome Research Institute (NHGRI) Bethesda, MD

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 Case Definitions

Additional Information:

There is no additional information for this collection.

Measure		Protocols	Domain/Collection
Complete Blood Count (CBC)	Add to My Toolkit	Complete Blood Count (CBC)	Rare Genetic Conditions
Current Age	Add to My Toolkit	Current Age	Demographics
Ethnicity and Race	Add to My Toolkit	Ethnicity and Race	Demographics
Gender Identity	Add to My Toolkit	Gender Identity	Demographics
Height	Add to My Toolkit	Height - Knee Height	Anthropometrics
	Add to My Toolkit	Height - Recumbent Length	Anthropometrics
	Add to My Toolkit	Height - Self-Reported Height	Anthropometrics
	Add to My Toolkit	Height - Standing Height	Anthropometrics
Hemoglobin Characterization	Add to My Toolkit	Hemoglobin Characterization	SCD: Core Tier 1
Pulse Oximetry (Rest)	Add to My Toolkit	Pulse Oximetry (Rest)	Respiratory
Weight	Add to My Toolkit	Weight - Measured Weight	Anthropometrics
	Add to My Toolkit	Weight - Self-Reported Weight	Anthropometrics