Sickle Cell Disease Core: Tier 2

Release Date:

July 30, 2015

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 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

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.

There is no supplemental information for this collection.

Additional Information:

There is no additional information for this collection.

Measure		Protocols	Domain/Collection
Annual Family Income	Add to My Toolkit	Annual Family Income	Demographics
Birthplace	Add to My Toolkit	Birthplace	Demographics
Birthplace of Grandparents	Add to My Toolkit	Birthplace of Grandparents	Demographics
Birthplace of Parents	Add to My Toolkit	Birthplace of Parents	Demographics
Current Employment Status	Add to My Toolkit	Current Employment Status	Demographics
Current marital status	Add to My Toolkit	Current Marital Status	Demographics
Educational Attainment - Individual	Add to My Toolkit	Educational Attainment - Individual	Demographics
Frequency of Sickle Cell Pain Episodes Per Year	Add to My Toolkit	Frequency of Sickle Cell Pain Episodes Per Year	Sickle Cell Disease: Core Tier 2
Health Insurance Coverage	Add to My Toolkit	Health Insurance Coverage	Demographics
History of Transfusion	Add to My Toolkit	History of Transfusion	Sickle Cell Disease: Core Tier 2
Marital Status of Primary Caregiver	Add to My Toolkit	Marital Status of Primary Caregiver	Sickle Cell Disease: Core Tier 2
Medication Inventory	Add to My Toolkit	Medication Inventory	Diabetes
Pediatric School Performance	Add to My Toolkit	Pediatric School Performance	Sickle Cell Disease: Core Tier 2
Years Living in the U.S.	Add to My Toolkit	Years Living in the U.S.	Demographics