The National Heart, Lung, and Blood Institute (NHLBI), the NIH Office of Dietary Supplements, and the NIH Office of Rare Diseases Research convened a Working Group entitled “Nutrition and Diet in Surveillance and Registry Studies of Hemoglobinopathies” on August 23-24, 2010, as part of the annual NHLBI Sickle Cell Disease Clinical Research Meeting in Bethesda, MD.
This Working Group identified priorities for basic, clinical, translational, and population science research regarding nutrition and diet in individuals with sickle cell disease and thalassemias.
The purpose of this Working Group was to:
National Heart, Lung, and Blood Institute (NHLBI)
NIH Office of Dietary Supplements (ODS)
NIH Office of Rare Diseases Research (ORDR)
Centers for Disease Control and Prevention, Atlanta (CDC)
Barden EM, Zemel BS, Kawchak DA, Goran MI, Ohene-Frempong K, Stallings VA. Total and resting energy expenditure in children and adolescents with sickle cell disease. J Pediatr 2000;136(1):73-9. PMID: 10636978.
Meeting Agenda (with links to abstracts and biosketches)
The Planning Committee gratefully acknowledges the assistance of the following NHLBI staff in the management of this workshop and preparation of this report: Christine Wiser Chung, Nina Hall, Maya Harris, Madison Scott, Wanda Ware, and Della Claiborne.
Moderator: Kathleen Durst, MA, LMSW, Cooley’s Anemia Foundation
Abby Ershow, ScD, NHLBI; Ellen Werner, PhD, NHLBI; Rebecca Costello, PhD, ODS
Thomas Coates, MD, University of Southern California
Thomas Ryan, PhD, UAB
Virginia Stallings, MD, University of Pennsylvania
Ellen Fung, PhD, Children’s Hospital-Oakland Research Institute
Robert Liem, MD, Northwestern University
Ralph Green, MD, PhD, University of California-Davis
Steven Zeisel, MD, PhD, University of North Carolina
Jean Ann Olds, RD, Colorado
Rebecca Costello, PhD, NIH Office of Dietary Supplements
Johanna Dwyer, DSc, RD, NIH Office of Dietary Supplements
Gina Cioffi, JD, Cooley’s Anemia Foundation
Eric Kirkwood, Uriel Owens Chapter, Sickle Cell Disease Assoc of America
Barbara Laraia, PhD, RD, University of California San Francisco
Althea Grant, PhD, CDC-Atlanta
Ellen Werner, PhD, NHLBI
Kathryn Porter, MD, MS, National Center for Health Statistics
Lanetta Jordan, MD, MPH, Barry University
W. Philip Tonkins, DrPH, National Institute of Arthritis and Musculoskeletal Diseases
Ellen Werner, NHLBI