What is Sickle Cell Disease and Trait 

Click here for this one page handout is available for printing and distribution.

Download a 1 page fact sheet to print and use

Problem Oriented Management of Sickle Cell Syndromes

A problem oriented SOAP note formatted guidebook for healthcare providers by James Eckman, M.D. and Allan Platt, PA-C ,published in 1991using grant support from the Genetic Services Branch of the Maternal and Child Health Bureau, U.S. Department of Health and Human Services (Grant MJC-131003-04), The Southeastern Regional Genetics Group (Grant MCJ 131002-08) and a legislative grant from the State of Georgia Department of Human Resources (DHR Contract 427-93-10593)

Available online only, Please Click Here

Palm -PDA version for download

Sickle Cell Disease In Children And Adolescents: Diagnosis, Guidelines For Comprehensive Care, And Care Paths And Protocols For Management Of Acute And Chronic Complications

Peter A. Lane, George R. Buchanan, John J. Hutter, Robert F. Austin, Howard A. Britton, Zora R. Rogers, James R. Eckman, Michael R. DeBaun, Winfred C. Wang, Prasad Mathew, Sarah Iden, Michael Recht, Jesse D. Cohen, Ernest Frugé, Leanne Embry, Lewis Hsu, Brigitta U. Mueller, Robert Goldsby, Charles T. Quinn, Marie Mann, and Michele A. Lloyd-Puryear for the Sickle Cell Disease Care Consortium

  The Child with Sickle Cell Disease A Teaching Manual 

Written and Developed by Debra A. Vedro, MSN, RN, CPNP And Rebecca A. Morrison, MSN, RN, CPNPat the  Children's Medical Center of Dallas, Dallas, Texas Illustrated by Mary Ann Zaplac, MA In Coordination with The Texas Department of Health This book my be downloaded and printed as a hand out. Click here to download a Word document to print

A Counseling Handbook for Sickle Cell and Other Hemoglobinopathies from  The Virginia Sickle Cell Awareness Program  http://www.vahealth.org/sicklecell/pubssc.htm

These are wonderful resources for parents and health care providers:
A complete guide for counseling and education for the most common hemoglobin variants identified through Virginia’s sickle cell screening program. PDF File

• Fast Facts Series
• Parent Handbook Part I - http://www.vahealth.org/sicklecell/docs/Parents_Handbook_Sickle_Cell_Disease_Part_I.PDF
• Parent Handbook Part II
• New School Handbook - Understanding Sickle Cell Disease:  A Handbook for School Personnel http://www.vahealth.org/sicklecell/docs/SchoolHandbook_SickleCellChild_PDF[1].pdf
  
• Hemoglobin A/S – Sickle Cell Trait
  
• Hemoglobin A/S – Sickle Cell Trait (Español)
  
• Hemoglobin A/C – C-Trait
  
• Hemoglobin Barts
  
• Beta Thalassemia
  
• Hemoglobin A/ Adult Variant

Sickle Cell Guide from Brazil

Online Guidebook for health care providers and patients about Sickle Cell Disease in Portuguese by Dr.Heloisa Helena Arantes Gallo da Rocha  a Hematologist in Brazil: Professional Guide  and Patient Guide

Sickle Cell Disease: Information For School Personnel  

A free  online book for school nurses, teachers and counselors from the New Jersey Department of Health & Senior Services Division of Family Services Special Child, Adult and Early Intervention Services at http://www.state.nj.us/health/fhs/sicklecell/index.html for a free copy  contact:

Special Child, Adult and Early Intervention Services
New Jersey Department of Health and Senior Services
P.O. Box 364
Trenton, New Jersey, 08625-0364 

(609) 984-1343
Fax (609) 292-3580

Keisha’s Transfusions and
Desferal™ Therapy - An Educational Coloring Book for Children with Sickle Cell Disease By Donna Dent and Beatrice Gee, MD
.Transfusion and Chelation Therapy Coloring Book  Download a version without color to print and use as a coloring book

 Bobby Blood Cell - An adventure in preventing sickle cell problems

Bobby Blood Cell Coloring Book and Power Point Presentation  Download a power point copy to print a coloring book By Donna Dent

 Link to the Globin Gene Server  

 A database of hemoglobin variants - This is an online version of the classic textbook of hemoglobin variants written by Dr. Heiusman at http://globin.cse.psu.edu/

University of Rochester Hemoglobinopathies Brochures and Fact Sheets at
http://www.urmc.rochester.edu/genetics/hemo.htm -This site has wonderful patient handouts on all of the common hemoglobinopaties and traits. This is a great resource for those involved with newborn screening and genetic counseling 

Pain assessment and pain management in sickle cell disease - A guide for patients and their families

From the staff of the

Georgia Comprehensive

Sickle Cell Center at

Grady Health System

Click Here

New 2002 - NIH Management and  of Sickle Cell Disease Fourth Edition - Now available online by clicking here or the entire 188 page book as a Adobe pdf download at http://www.nhlbi.nih.gov/health/prof/blood/sickle/index.htm

The latest guidelines from the Nation's top Sickle Cell Experts

Palm -PDA version for download

Power Point Tutorial about Sickle Cell Disease 

Sickle Cell Tutorial - Introduction

Sickle Cell Tutorial - Normal Blood

Sickle Cell Tutorial - Sickle Cell

Sickle Cell Tutorial - Healthy Living

Sickle Cell Tutorial - Research

Sickle Cell and Nutrition

Sickle Cell Video

drSpock.com  Sickle Cell Topics and  Questions 

http://www.drspock.com/topic/0,1504,467,00.html

Sickle Cell Disease: The Basics
Myths & Truths about Sickle Cell Disease
The Subtle Differences of Sickle Cell Syndromes
General Medical Care for Children With Sickle Cell Disease
Understanding Sickle Cell Disease: Instructions for Teachers
The Importance of Fluids for Children with Sickle Cell Disease
Diet and Nutrition in Sickle Cell Disease 
Sports Participation and Sickle Cell
Air Travel with Sickle Cell Disease
Sickle Cell Pain: Avoiding Dehydration, Exhaustion and Temperature Extremes
Infections In Sickle Cell Disease: Overview
Acute Chest Syndrome in Sickle Cell Disease
Types of Infections in Sickle Cell Disease
Preventing Infection in Sickle Cell Disease
The Immune System in Sickle Cell Disease
Parvovirus B19 Infections in Sickle Cell Disease
The Purpose of Blood Tests in Sickle Cell Disease
Avascular Necrosis: A Complication of Sickle Cell
The Role of the Spleen in Sickle Cell Disease
Sickle Cell Disease and Elective Splenectomy
Hydroxyurea Treatment for Sickle Cell Disease
Treating Sickle Cell Disease with Bone Marrow Transplantation

Guidelines for Standard of Care of 
Acute Painful Episodes in Patients with 
Sickle Cell Disease

Developed by: 
Samir K. Ballas, MD (1)  Timothy M. Carlos, MD (2) Carlton Dampier, MD (3) and the Guidelines Committee Commonwealth of Pennsylvania
Department of Health http://mayday.coh.org/html/guidelines_stdofcare_sickle.htm

Coping with Sickle Cell Disease and Pain - A Self Help Manual for Adults and Children

The Brent Sickle Cell and Thalassaemia Centre - a Service of North West
London Hospitals NHS Trust  Psychology Website online self help books for adults and children to print using the free Adobe reader  http://www.sickle-psychology.com/NewFiles/manual.htm

Guidelines For The Treatment Of People With Sickle Cell Disease

SCAC

Click here to download the guidelines in RTF - Word format

Click here to download the tables and pathways in power point format

Part 1 vertical slides

Part 2 horizontal slides

Written By Members Of SCAC (The Sickle Cell Advisory Committee) Of Genes (The Genetic Network Of New York, Puerto Rico And The Virgin Islands) With The Support From Grants From HRSA

Available For Reproduction. Please Cite Source.

For More Information:

Katharine B. Harris, M.B.A.

Wadsworth Center, Room E-297

P.O. Box 509, Albany, Ny 12201

(518) 474-7148

Kbh02@Health.State.Ny.Us

SCAC – The Sickle Cell Advisory Committee Of Genes