World Wide Resources Health Care Providers

World Wide Web Sites

Disclaimer: The following links are provided as a service to our users. This link does not imply endorsement or support of any programs or organizations. The Sickle Cell Information Center sponsors are not responsible for the content of the individual organization home pages. Click on a category below or scroll down:

Health Care Providers,  Patients and Families, Kid Friendly, Organizations, New Born Screening - Genetics, Teachers and Students, Bone Marrow Transplant, Cord Blood - Stem Cell, Incidence and distribution,  Pain Management, Stroke prevention - Transfusion, Other medical sites

Sickle Cell Web Sites for Health Care Providers

See NLM- Medline articles about sickle cell disease for the past 6 months - Read the medical articles published in the last 6 months about sickle cell disease, research results, and new treatments.

Management and Therapy of Sickle Cell Disease http://www.nhlbi.nih.gov/health/prof/blood/sickle/index.htm  A clinical guide for health care professionals by a group of pediatricians, nurses, hematologists, and internists summarizes collective experiences with various therapeutic regimens. Updated to reflect recent advances and modifications in the clinical management of sickle cell disease as well as findings from the Preoperative Transfusion Study, the Prophylactic Penicillin Trial II, the Multicenter Hydroxyurea Study, and epidemiological data from the Cooperative Study of Sickle Cell Disease. NIH Publication No. 95-2117. 114 pages.  Click here to read online

Problem Oriented Clinical Guidelines - These protocols are guidelines in use at the Sickle Cell Center at Grady Health System, and they are intended for use by heath care providers treating patient with sickle cell syndromes.

CDC-Genetic Diseases - Sickle Cell Page - An excellent review of the chromosomal aspects of sickle cell, the US prevalence by state, and complication rates ( for high school Level)  at:  http://www.cdc.gov/genomics/hugenet/reviews/sickle.htm

Global Sickle Cell Forum at http://www.sicklecellforum.org

We are inviting you to share your unique insights and experience on a new web resource devoted to the management of sickle cell disease in pediatric patients.
A recurring topic of discussion has been the need for a web-based resource focused on pediatric sickle cell disease, similar to the website that currently exists for adult patients. Thanks to an educational grant provided by Novartis to fund initial startup, we are pleased to announce the launch of the Global Sickle Cell Forum.

Global Sickle Cell Forum ( www.sicklecellforum.org ) is a dynamic interactive web forum where you can participate in online discussions with colleagues from all over the world and share information about important disease management issues:

-Submit and discuss challenging patient cases
-Share insights about diagnosis guidelines, treatment options, and patient management strategies
-Upload and download slide presentations or study data
-Post information about clinical trials, research opportunities, and relevant medical meetings
-Initiate discussions or request feedback on any other related issues

You can read the posts and access the educational materials that appear on Global Sickle Cell Forum, but if you wish to post responses or contribute content you must first register and create a free user profile.

The content for this site will be physician driven and maintained. Therefore, we are asking if you would kindly contribute some initial content to help build the knowledge base. Feel free to provide your slide presentations, links to relevant articles you have published, or clinical trials updates. Submitting a topic for general discussion or sharing your professional observations about a particular issue to stimulate a lively dialogue would also be helpful and appreciated.
To add content, simply go to www.sicklecellforum.org and create your user profile. Then click the appropriate topic heading and submit your comment, discussion question, or supplemental materials. Current topics are shown below, and additional topics will be created as needed:

General Discussion
Upload/View Slides
Clinical Trials
Standard of Care Guidelines
Research Opportunities
Upcoming Medical Meetings
Challenging Patient Cases

Sickle cell disease can be very discouraging and distressing for both patient and clinician. By sharing our unique insights, expertise, and professional experiences on Global Sickle Cell Forum, we can all increase our understanding of this complex disease and immediately incorporate this knowledge into improved management strategies for our pediatric patients. We also encourage you to tell your colleagues about this important resource.
Thank you very much for your participation.

Sincerely,
Kwaku Ohene-Frempong, MD Co-Chair 
Elliott P. Vichinsky, MD Co-Chair

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The European School of Haematology (ESH)  The Curriculum in Iron Metabolism and Related Disorders
Now available : Course 1 End-organ Damage Resulting from Accumulation of Iron in Cells
Presented by Pierre Brissot, MD : http://www.ironcurriculum.esh.org/ 

An online educational course with the following objectives:

• Assess the molecular physiology of iron metabolism and the factors contributing to its pathophysiology and resultant iron overload, based on an understanding of hepcidin, ferroportin, transferrin, NTBI, LPI, transfusional iron overload, and genetic iron overload.
  
• Identify the spectrum of disease states associated with iron overload, both primary and secondary, and the clinical sequelae resulting from iron overload on the main visceral targets of iron excess (hepatic, cardiac, endocrine organs, skeletal system) as well as morbidity and mortality.

  ---

Achieving Balance in Federal and State Pain Policy: A Guide to Evaluation (Fourth edition), and w Achieving Balance in State Pain Policy: A Progress Report Card (Third edition)
The new edition of the Evaluation Guide is the fourth in a series of evaluations of federal and state pain policies. The Progress Report Card quantifies state pain policies, and benchmarks progress to promote pain management and reduce policy barriers by comparing 2007 state policy grades with those from 2000, 2003, and 2006. These tools can be used by government and non-government organizations, as well as policy-makers, healthcare professionals, and advocates to understand the policies in their state that reinforce the right to pain management, or that can hinder patient access to effective treatment.

To view or download these reports, as well as a national press release, Frequently Asked Questions, and a summary of grade changes, visit the PPSG website at http://www.painpolicy.wisc.edu

Stem Cell Transplant Review by CIGNA Insurance Company at http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0464_coveragepositioncriteria_stem_cell_transplant_sickle_cell_disease.pdf

New  ERs Article Published - Platt A, Eckman JR, Beasley J, Miller G. Treating sickle cell pain: An update from the Georgia comprehensive sickle cell center. J Emerg Nurs 2002 Aug;28(4):297-303 Full Text is available as PDF file for Adobe download by clicling here or see the article online at:  http://www2.us.elsevierhealth.com/scripts/om.dll/serve?action=searchDB&searchDBfor=art&artType=fullfree&id=a125268

  Sickle Cell Disease in Children and Adolescents: Diagnosis, Guidelines for Comprehensive Care, and Protocols for Management of Acute and Chronic Complications© Revised at the Joint Regional Hemoglobinopathy Conference Mountain States Regional Genetic Services Network (MSRGSN) Texas Genetics Network (TEXGENE) Sedona, AZ November 12-14, 1999
Download at http://www.tdh.state.tx.us/newborn/sc_guide.htm

Pharmaceutical Company Web Links - This page is a listing of pharmaceutical companies with products helpful to sickle cell patients

The International Association of Sickle Cell Nurses and Physician Assistants (IASCNAPA) - This page describes the mission and the contacts for the first and only organization of nurses, nurse practitioners and physician assistants working with sickle cell patients.

Sickle Cell Disease: Information For School Personnel  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

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

American Academy of Pediatrics article :Health Supervision for Children With Sickle Cell Diseases and Their Families at http://www.aap.org/policy/re1011.html

  eMedicine - Online Emergency Medicine Text online - General sickle cell patient care at: http://emedicine.com/cgi-bin/foxweb.exe/showsection@d:/em/ga?book=emerg&topicid=26

  Approach to the Vaso-occlusive Crisis in Adults with Sickle Cell Disease at http://www.aafp.org/afp/20000301/1349.html

  Sickle Cell Disease in Childhood: Part I. Laboratory Diagnosis, Pathophysiology and Health Maintenance at http://www.aafp.org/afp/20000901/1013.html

  Sickle Cell Disease in Childhood: Part II. Diagnosis and Treatment of Major Complications and Recent Advances in Treatment by  DORIS L. WETHERS, M.D., St. Luke's­Roosevelt Hospital Center, New York, New York at http://www.aafp.org/afp/20000915/1309.html

  Practice Guidelines Management of Pain in Sickle Cell Disease - American Pain Society Guidelines an Overview at http://www.aafp.org/afp/20000301/practice.html

Sickle Cell Disease - No System is Spared  article by Connie Goldsmith in Nurse Week http://www.nurseweek.com/ce/ce135a.html

Sickle Cell Summary by Michael Joyce, M.D. a Hematologist/Oncologist at Nemours Children's Clinic / Jacksonville.    at http://www.dcmsonline.org/jax-medicine/june2000/clinical.htm

THE GEOGRAPHY OF SICKLE CELL DISEASE: OPPORTUNITIES FOR UNDERSTANDING ITS DIVERSITY by Graham R. Serjeant, MD, FRCP at http://www.kfshrc.edu.sa/annals/143/rev9239.html

Iron Overload and Chelation Therapy Information from The Children's Hospital at Oakland at http://www.thalassemia.com/transfusion/overload.shtml Chelation Therapy at http://www.thalassemia.com/transfusion/chelation.shtml

Prevnar the new pneumoccocal vaccine at http://www.prevnar.com/

Vanderbilt University Medical Center. Lecture note introduction to sickle cell disorders http://www.mc.Vanderbilt.Edu/peds/pidl/hemeonc/sickle2.htm

The Clinical Trials web site at http://clinicaltrials.gov/ct/gui - The U.S. National Institutes of Health, through its National Library of Medicine, has developed ClinicalTrials.gov to provide patients, family members and members of the public current information about clinical research studies.NIH Clinical Trials for Sickle Cell Currently ongoing at http://clinicaltrials.gov/ct/gui/c/b/action/FindCondition?ui=D000755&recruiting=true

The Medical College of Georgia STOP Study Web Site at http://www.neuro.mcg.edu/cvhp/STOP/index.html - The Stroke Prevention Trial in Sickle Cell Anemia, or STOP, was a randomized trial which proved that periodic (approximately monthly) blood transfusions prevent strokes in children with sickle cell anemia who had not yet had a stroke. This site has links to Centers that can perform TCD screening and courses for TCD screening

RxAssist at http://www.rxassist.org/ provides health care providers with information on accessing more than 100 pharmaceutical manufacturers' patient assistance programs. These programs usually offer a limited supply of free prescription medication to eligible patients.

Sickle Cell Anemia at Medic - Planet  http://www.medic-planet.com/MP_article/internal_reference/Sickle_cell_anemia

Sickle Cell Disease Review - at http://scdreview.tripod.com/ a literature review, bibliography, and general information on the disease

Sickle Cell Disease: Screening, Diagnosis, Management, and Counseling in Newborns and Infants Clinical Guideline Number 6 at search for newborn sickle cell http://hstat.nlm.nih.gov/ 

X-ray Changes in Sickle Cell Disease at http://rad.usuhs.mil/rad/home/cases/sickle.html

Sickle Cell Trait article by Dr. John Kark at http://sickle.bwh.harvard.edu/sickle_trait.html - An excellent and comprehensive review of potential problems facing those with sickle cell trait

http://www.draheloisa.hpg.com.br/ Guidelines in Portuguese from the Brazil Sickle Cell Center

Basic Pain Assessment in Adults An On-Line Continuing Education Home Study Course for Nursing and Pharmacy  Professionals
 Diane Scheb, RN, MSN Acute Pain Program Coordinator and Clinical Nurse Specialist Sarasota Memorial Hospital, Sarasota, Florida  Chris Pasero, RN, MS Pain Management Consultant Rocklin, CA http://www.baxter.com/doctors/iv_therapies/education/index.html

American Society of Pediatric Hematology/Oncology at http://www.aspho.org/

VA Hospital  - Pain as the 5th Vital sign http://www.va.gov/Pain_Management/

Sickle cell Education for Nurses at  http://courses.nus.edu.sg/course/patleesh/ha/sickle.htm

See a chart of hemoglobin electrophoresis patterns at http://family.georgetown.edu/welchjj/netscut/heme_onc/hemoglobin_electrophoresis.html

Sickle Cell Images at  http://freespace.virgin.net/monica.alcide/sc/images.htm

  See a sickle blood flow animation:  http://www.mckinley.uiuc.edu/multiculturalhealth/diseaseSum/sickle.html

American Pain Foundation 201 N. Charles St., Suite 710 Baltimore, MD 21201-4111 ph: 410-783-7292  fax: 410-385-1832
www.painfoundation.org

Gene therapy http://www.ornl.gov/hgmis/medicine/genetherapy.html

Human Genome project at http://www.ornl.gov/hgmis/project/info.html

All about Blood at http://sln.fi.edu/biosci/blood/blood.html

Blood facts at http://www.bloodbook.com/facts.html

Cells in the Blood at http://www-micro.msb.le.ac.uk/MBchB/bloodmap/Blood.html

Blood Cell Atlas at http://image.bloodline.net/category

Sickle Cell Tutorial - for students teachers, an  patients. This page kindly sponsored by a grant from the NIH Science Education Partnership Award (SEPA) Program.  http://k14education.uams.edu/SickleCell/about.html

Caring for a child with sickle cell disease. http://www.ucdmc.ucdavis.edu/health_tip/cfacwscd.html

Treatment of sickle cell eye problems at http://www.revoptom.com/handbook/sect7e.htm

The Human Genome Sickle Cell Page at http://www.ornl.gov/hgmis/posters/chromosome/sca.html

Height and Weight Growth Curves from the  Arch Dis Child 2000;82:204-208 ( March ) P W Thomasa, A Singhalb, M Hemmings-Kellyc, G R SerjeantcHeight and weight reference curves for homozygous sickle cell disease. Available online at http://adc.bmjjournals.com/cgi/content/full/archdischild%3b82/3/204

Pediatric Pain Source book at http://www.dal.ca/~painsrc/ An excellent resource for pain assessment tools

Anemia.com at http://www.anemia.com/ The many causes of anemia and treatments for those causes.

Pediatric Pain Source book at http://www.dal.ca/~painsrc/ An excellent resource for pain assessment tools

New Genetics course on CD-ROM at http://www.twistedladdermedia.com/  This has a section about sickle cell disease and all of the clinically relevant genetic diseases. The New Genetics™: Medicine and the Human Genome is a multimedia CD-ROM for those interested in the impact of genetics and genomics on healthcare and society. The New Genetics™: Courseware for Physicians is a CD-ROM for physicians who wish to update their knowledge of genetics and genomics. CME credits are available
through Stanford University.

The Cochrane Evidence based medicine site at http://www.cochrane.org/

TASC, the Unit for the Social Study of Thalassaemia and Sickle Cell based in Leicester in the United Kingdom.at  http://www.tascunit.com/

Easing the Pain of Sickle Cell Anemia (Nursing Spectrum Magazine Articles) Lorraine Steefel, RN, MA http://community.nursingspectrum.com/MagazineArticles/article.cfm?AID=664

Sickle Cell Pain & Hydroxyurea  AJN, American Journal of Nursing November 2000  Volume 100 Number 11 Page 34 By Sara W. Day, BSN, RN, and Lynn Witte Wynn, BSN, RN http://www.nursingcenter.com/prodev/ce_article.asp?tid=53378
This is a wonderful summary about Hydrea treatment .

History of Sickle Cell Discovery: Sickle Cell Research for Treatment and Cure commemorates the 30th anniversary of
the the National Sickle Cell Anemia Control Act (P. L. 92-294). This is a historical look at sickle cell disease research and treatment up until the present moment. It is excellent for both patients, family members and health care providers. It is in Adobe format for download. http://www.nhlbi.nih.gov/resources/docs/scd30/index.htm 

New Web page - Medical Staff Orientation Guide - A collection of videos, handouts and guidelines for medical personnel who want an overview for caring for sickle cell patients. Click here

Free CME Activity: Taking the Pain out of Pain Management: Pain management is less than optimal in many areas of the United States, and this session addresses topics that will be of use in most practice settings. The disparity of pain treatment in the ER will be reviewed and the treatment of common pain syndromes. This program has been reviewed and is approved for a maximum of 2.0 hours of clinical Category I (Pre-approved) CME credit by the American Academy of Physician Assistants. http://www.mecgeducation.com/jaapa/pain_management/default.asp

New Health Literacy Video from the AMA foundation - See how patients may struggle with instructions, prescriptions and health information View the streaming video at  http://classes.kumc.edu/general/amaliteracy/

United Way Atlanta at http://www.unitedwayatl.org/

10 things to know when evaluating medical web sites

SICKLE CELL PAIN RELIEF RECORD from St. Francis Hospital and Medical Center The Center for Children's Health and Development, Hartford, CT Developed by: Saint Francis Hospital and Medical Center/ UCONN-Saint Francis Sickle Cell Services. This is a printable booklet for patients to complete with their doctor and carry with them. http://www.cityofhope.org/prc/html/sickle_cell_pain_relief_record.htm

Congressional Black Caucus Foundation Heath web site at www.cbcfhealth.org provides the information you need, when you need it from people you trust." Our mission is to empower people of African descent to make better decisions about their health and that of their community. www.cbcfhealth.org provides factual information about public health issues that directly and indirectly this target population. Sickle Cell articles are at :
 http://www.cbcfhealth.org/content/contentID/1017 and http://www.cbcfhealth.org/content/contentID/1018

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

Are You Mistreating Sickle Cell Patients? From ED Nursing | July 2003 http://www.ahcpub.com/ahc_root_html/hot/archive/2003/edn072003.html

Allrefer.com -  information on Sickle Cell Disease - http://health.allrefer.com/health/sickle-cell-anemia-info.html

Sickle Cell Article - Congressional Black Caucus Health Foundation http://www.cbcfhealth.org/content/contentID/1018

March of Dimes Professional Fact Sheet on Sickle Cell Disease at http://www.marchofdimes.com/professionals/681_1221.asp

Iron Overload in Hematologic Disorders – Interactive CME Program from the  45th ASH Annual Meeting Corporate Friday Symposium. View interactive video presentations and one-on-one faculty interviews. Learn about exciting new developments in the treatment of iron overload and transfusion therapy in sickle cell disease. Professionals can obtain free CME credit Please visit http://www.ironoverload-cme.com

NIH Report on the Web-  NHLBI Meeting Summary-  A Consultative Network for Sickle Cell Disease How to improve adult sickle cell care http://www.nhlbi.nih.gov/meetings/workshops/conscd.htm

The March Partners Against Pain  E - Newsletter is focused on Sickle cell disease - A summary of news, events and resources available at 
http://www.partnersagainstpain.com/painadvocacycommunity/05-05/Index.asp
or the click here for a  pdf file.

American Society of Hematology ASH short course on Evidence Based Medicine (EBM) using the example of hydroxyurea in sickle cell disease. Complete a short registration and you have access to this excellent e-course on how studies are designed, EBM, and how to evaluate medical studies. http://www.hematology.org/education/

American Society of Hematology Sickle Cell Update - an excellent review on the research progress from 2002 online at http://www.asheducationbook.org/cgi/content/full/2002/1/10?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&titleabstract=sickle&searchid=1047417786610_660&stored_search=&FIRSTINDEX=0&journalcode=bloodbook

Other Medical Sites of Interest

 

National Library of Medicine - Free MedLine Searching

 

Georgia Public Health Web Site

 

New Web Translation Service by Babel Fish - Translate the guidelines and information into several languages.

National Heart, Lung, and Blood Institute (NHLBI), a part of the Federal Government's National Institutes of Health.

 

Agency for Health Care Policy Research (AHCPR)

 

Department of Health and Human Services (DHHS) healthfinder
American Society of Hematology (ASH)

 

The Centers for Disease Control (CDC)

 

The Merck Manual Online

 

Medsite Navigator - a Guide to Internet Biomedical Resources

 

Medscape - Medical News, CME, Reviews and More

 

The Virtual Medical Center - Matindale's Health Science Guide

 

WebMedLit: Medical Journals Online - Links to JAMA, NEJM, others

 

Agency for Health Care Policy and Research (AHCPR) Monographs

World Health Organization (WHO)

 

American Red Cross

American Association of Blood Banks

 

American Medical Association

American College of Physicians (ACP)

Emory MedWeb Medical Resources

Quackwatch - Combating health fraud and myths

Tufts University Nutrition Navigator

U.S. Food and Drug Administration (FDA)

University of Iowa -Virtual Hospital

Alliance of Genetic Support Groups

American Academy of Pediatrics

Dr. Koop's Medical Community

Starbright Foundation - for children and teens

Grady Health System - home of the Georgia Comprehensive Sickle Cell Center

Send mail to aplatt@emory.edu with questions or comments about this web site.
Copyright © 1997 Sickle Cell Information Center
Last modified: October 19, 2007