Newborn Screening for Sickle Cell Disease

Comprehensive Care

In Virginia, all newborns are screened for sickle cell disease. This effort has dramatically reduced the number of deaths from life threatening complications through:

• Identification and confirmation of disease status prior to onset of clinical symptoms
• Enrollment of families into a comprehensive care plan that includes parent education and support
• Early administration of prophylactic penicillin
Comprehensive Care for NewbornsComprehensive care represents a partnership between the primary care provider and a medical center staffed with professionals sensitive to the medical and social needs of individuals and families living with sickle cell disease. Comprehensive Sickle Cell Clinics are designed to enhance the resources of both providers and families.

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Referral Sites For Pediatric Comprehensive Sickle Cell Services

Central Contact Numbers Virginia Commonwealth University Health System Department of Pediatrics Division of Hematology/Oncology E. Clifton Russell, MD – Consultant (804) 828-9605 (Main Office) Eastern   Children’s Hospital of the King’s Daughters Department of Pediatrics Division of Hematology/Oncology William Owen, MD – Consultant (757) 668-7246 Northern Virginia - Annandale   Inova Fairfax Hospital for Children for Pediatric Sickle Cell Center (703) 876-2715 Western – Charlottesville and Roanoke   University of Virginia Medical School Department of Pediatrics, Hematology/Oncology Peter Waldron, MD - Consultant (434) 924-5105 Carilion Roanoke Community Hospital Department of Pediatrics Division of Hematology/Oncology Joan Fisher, MD, Ph.D., Consultant  (540) 985-8055

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Professional

Clinical Practice Guidelines and Counseling Tools

Health Supervision for Children with Sickle Cell Disease
American Academy of Pediatrics
Policy Statement
Pediatrics, Volume 109, Number 3
March 2002, pp 526-535http://aappolicy.aappublications.org/cgi/content/full/pediatrics;109
/3/526?fulltext=sickle+cell&searchid=QID_NOT_SET

Critical Elements of Care on Sickle Cell
Center for Children with Special Needs
Children's Hospital and Regional Medical Center Seattle, WA
Critical Elements of Care on Sickle Cell a 43 page pediatric care guidebook
http://www.cshcn.org/resources/CEC.htm
for the Adobe version
http://www.cshcn.org/forms/SickleCell_5-03.pdf

A Counseling Handbook for Sickle Cell and Other Hemoglobinopathies
The Virginia Sickle Cell Awareness Program
A complete guide for counseling and education for the most common hemoglobin variants identified through Virginia’s sickle cell screening program. PDF File

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