World Wide Resources

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 - Stem Cell transplant, Incidence and distribution,  Pain Management, 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/sick-mt.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

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.

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 Acadamy of Pediatrics article :Health Supervision for Children With Sickle Cell Diseases and Their Families at http://www.aap.org/policy/01564.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 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 Web Sites for Patients and Families

The Wellness Web Parent's Sickle Cell Information Page at: http://wellweb.com/INDEX/QSICKLE.HTM - This site is well written summary for parents. It is great as a printed resource. 

New Hope for People with Sickle Cell Anemia- Publication No. (FDA) 98-1251 This is a great lay audience review about sickle cell and the new preventive treatment hydroxyurea or hydrea.

Sickle Cell Advocates for Research and Empowerment (S. C.A. R.E. ) http://www.defiers.com/  In 1997 Deborah and Ivor Pannell formed Sickle  Cell Advocates for Research and Empowerment (S. C. A. R. E. ) whose primary  aim is to equip the sickle cell community with up-to-date information that  encourages advocacy and self-empowerment. The site includes everything from 
"Research News" to  to the personal experiences of "BloodSongs," as well as a comprehensive listing of links.

  DrSpock.com - Sickle Cell Articles for Parents co-authored by Dr. Lewis Hsu or the Sickle Cell Center on http://www.drspock.com/topic/0,1504,467,00.html

Mayo Clinic - Health Oasis article on Sickle Cell Disease - This is an excellent article about sickle cell disease and a gateway to thousands of excellent health related articles on many subjects. (http://www.mayohealth.org/mayo/9807/htm/sickle.htm)

March of Dimes Sickle Cell Education Handout - This is a great hand out for lay audiences 

The Wellness Web article on Sickel Cell Disease http://www.wellnessweb.com/INDEX/sicklecell/about_sicklecell.htm

  Sickle Cell Disease: What's on the Horizon? by Teresa Thompson at drkoop.com http://go.drkoop.com/news/special-reports/sicklecell/

March of Dimes Sickle Cell Handout  in english and spanish at http://www.modimes.org/HealthLibrary2/FactSheets/Sickle_Cell_Disease.htm

Spanish hand out at http://hstat.nlm.nih.gov/ftrs/tocview

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

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.

Prevnar the new pneumoccocal vaccine at http://www.prevnar.com/ The importance of early immunization. 

Sickle Cell Anemia Information for Parents at The Nemours Foundation Kids Health for Parents web site at: http://kidshealth.org/parent/medical/heart/sickle_cell_anemia_p2.html

The NIH MedLine Plus web links for sickle cell disease  lists the Sickle Cell Information Center and other great sites at: http://www.nlm.nih.gov/medlineplus/sicklecellanemia.html

Link to: The Human Genome Project Sickle Cell Education Site at http://www.massinteraction.org/html/genome/- This is a great site for students, teachers and patients who would like to know the origin of sickle cell disease. There are great graphics and well organized information.

Hertz Nazaire's sickle cell patient run website - This is one of the best and most comprehensive patient run sites at http://members.tripod.com/nazaire1/

  Practical Tips for Preventing a Sickle Cell Crisis for parents and patients at http://www.aafp.org/afp/20000301/1363ph.html  

Genes and Disease - Sickle Cell at http://www.ncbi.nlm.nih.gov/disease/sickle.html

Sicke Cell - University of Pittsburgh Graduate School of Public Health  at http://www.pitt.edu/~mahst51/ a good summary

  Sickle Cell Disease What is sickle cell disease? at http://www.aafp.org/afp/20000901/1027ph.html

The National Maternal and Child Health Clearinghouse (NMCHC) at http://www.nmchc.org/ has the following titles:

A Parents' Handbook for Sickle Cell Disease, Part II: Six to Eighteen Years of Age (1994, 80 pp.) H033
Koneksyon Familial: Tras Selil Falsifòm (Family Connection: Sickle Cell Trait)—in Haitian Creole (1993, 4 pp.) G055
Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies (1987, 8 pp.) F023
Parents' Handbook for Sickle Cell Disease, Part I: Birth to Six Years of Age (A) (1998 Revision) (1998, 114 pp.) F060

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

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.

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

Donating Blood for Sickle Cell Patients - This is an excellent write up about all of the good reasons to donate blood for sickle cell patients.

WebMD Sickle Cell Information This article from the editors of Harvard Medical School's Well Connected is an excellent review of Sickle Cell Disease and the current research.at http://my.webmd.com/topic_summary_article/DMK_ARTICLE_40076

  AMA Fact sheet about sickle cell disease at http://www.ama-assn.org/insight/spec_con/patient/pat051.htm

Starbright releases the educational Sickle Cell CD -ROM - he Sickle Cell Slime-O-Rama Game is an interactive "quiz show" where players are challenged to answer questions about sickle cell disease and learn fundamental principles about disease management and adherence. The goal of the game is to provide children and teens with basic skills about communicating pain to adults, coping with a pain episode, and preventing more severe pain episodes. Designed for ages 6 to 14. Other resources on the CD include Blood Tests: Exploring Our Incredible Blood Targeted toward teens and pre-teens ages 10 to 15, Spotlight on IVs, and Medical Imaging: Welcome to the Radiology Center STARBRIGHT's "Virtual Radiology Tour" go to STARBRIGHT's web site at http://www.starbright.org/projects/hes/index.html

Kid Friendly Sites

Planet Sickle - A kids site hosted by the Sickle Cell Society in the UK at http://www.sicklecellsociety.org/sicklescene/pshome.htm

www.SicklecellKids.org is up and running - This demonstration of the new Web site for sickle cell education and inspiration is up for viewing. The full story of the author and design is at: New Sickle Cell Web site for Kids is in Development

  BandAids and Blackboards at http://www.faculty.fairfield.edu/fleitas/contents.html A website, designed to improve the quality of life for children growing up with serious medical problems. The site contains their narratives, poetry, and tips for parents, health professionals and teachers, as well as many more pages of interactive resources, a hospital tour, and lesson plans. The site is the recipient of many awards, including a 2000 first prize in the Childnet International competition

Starbright Foundation - for children and teens There are wonderful resources for sickle cell kids.

Sickle Cell Organization - Clinic Web Sites

The NIH Comprehensive Sickle Cell Centers - Statistical Coordination Web Site at http://www.rhofed.com/sickle/ This is a new site with information on the 10 NIH funded comprehensive sickle cell centers in the US. There are links to other sickle cell sites.

 

The Sickle Cell Foundation of Georgia  at http://www.sicklecellatlaga.org/ - This is the web site for our web partners with testing information, Georgia news, and events in and around Atlanta

 

The Medical College of Georgia - Sickle Cell Clinic and Outreach Clinics in Augusta- Heath maintenance clinics for adults and children website: http://www.mcg.edu/centers/sicklecell/Index.htm

 

Medical College of Georgia Stroke Prevention Program STOP study - This is the headquarters of the stroke prevention study that demonstrated a new method - Trans-cranial doppler ultrasound , to detect sickle cell children at risk for strokes. Links and contacts for all the participating centers are available.

Sickle Cell Disease Association of America (SCDAA)- This is a the home page for the national organization of Sickle Cell Disease Association of America, Inc representing the many community sickle cell organizations across the nation. There is a list of educational materials for purchase and news

Harvard Sickle Cell Program at http://sickle.bwh.harvard.edu/

Howard University Sickle Cell Center in Washington DC at http://www.huhosp.org/sicklecell/index.htm

Sickle Cell Disease Association of Texas-Gulf Coast- This is a the home page for the Texas community group listing services to the Gulf Coast region of Texas

The American Sickle Cell Anemia Association Web at http://www.ascaa.org/ - This site originates out of Cleveland Ohio, and lists local and national resources.

THE PSYCHOLOGY WEBSITE OF SICKLE CENTRAL
The Brent Sickle Cell and Thalassaemia Centre  at http://www.sickle-psychology.com/

Gene Aid - a Fund raising organization in the UK at http://www.geneaid.org/

  State of New Jersey Sickle Cell Help  site at http://www.state.nj.us/health/fhs/sicklecell/familyguide/

  Sickle Cell Anemia Association of Austin - Marc Thomas Chapter http://www.tdh.state.tx.us/newborn/austin_sc.htm

The Sickle Cell Disease Association of San Diego at http://www.scdaa-sd.org/

SUNY - Children's Medical Center of Brooklyn, Brooklyn, New York Sickle Cell Program at http://research.hscbklyn.edu/pscp/smseelig.htm- This is a news letter format about SUNY's Pediatric Sickle Cell Program with links to other resources.

Brussels Red Blood Cell  Sickle Cell Information http://erasmeinfo.ulb.ac.be/globule/English/sickle.htm Information in French and English about sickle cell disease and other anemias from Erasme University Hospital - Brussels Belgium

The Jamaican Sickle Cell Unit and Medical Research Council at http://mrcjamaica.nimr.mrc.ac.uk/ This is a well organized web site , full of information and articles from the MRC Sickle Cell Center in Jamaica. This site may be down at times, so try back again, it is worth the visit.

Sickle Cell Advocates for Research and Empowerment (S. C.A. R.E. ) http://www.defiers.com/  In 1997 Deborah and Ivor Pannell formed Sickle  Cell Advocates for Research and Empowerment (S. C. A. R. E. ) whose primary  aim is to equip the sickle cell community with up-to-date information that  encourages advocacy and self-empowerment. The site includes everything from 
"Research News" to  to the personal experiences of "BloodSongs," as well as a comprehensive listing of links.

United Kingdom Sickle Cell Website - Clinics and Information - This is a comprehensive site detailing sickle cell services in the U.K.

The Sickle Cell Society in London UK - This is an excellent site with education, news and services in London. at http://www.sicklecellsociety.org/index.htm

          Fight Sickle Cell Disease at http://www.fightscd.com/homepage.htm 

The Sickle Cell Project - The homepage for a project sponsored by the University Affiliated Programs of Arkansas and the Delta Health Education Center.

The Medical University of South Carolina Pediatric Sickle Cell Page at http://www.muschealth.com/pscc/index.htm

Sickle Cell Web Sites for Teachers and Students

Link to: The Human Genome Project Sickle Cell Education Site at http://www.massinteraction.org/html/genome/- This is a great site for students, teachers and patients who would like to know the origin of sickle cell disease. There are great graphics and well organized information.

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/genetics/hugenet/reviews/sickle.htm

University of Pittsburgh Graduate School of Public Health  at http://www.pitt.edu/~mahst51/  a nice review article

  Sickle Hemoglobin Electron Micrograph at the University of Chicago http://gingi.uchicago.edu/

Sickle Cell Hemoglobin Tutorial at http://bioweb.ncsa.uiuc.edu/educwb/tutorials_current/Sickle_Cell_Anemia/

Washington University  Biology Department Sickle Cell Web PageThis is an excellent site for students and patients. A Case Study | Discovery and Biological Basis | Molecular Biology of Sickle Celled Hemoglobin | Biogeography and Ecology of Sickle Celled Anemia | Treatment and Political Aspects are all section for review. The graphics and questions are excellent. - High School - College level http://www.nslc.wustl.edu/courses/Bio296A/allen/sicklecell/sicklecell.html  

New Born Screening- Genetics Web Sites 

Southeastern Regional Genetics Group - SERGG - This is a great resource for those in the South East. There are links to other genetic resources and conferences.

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

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

 

Texas Newborn Screening Program Bureau of Children's Health at http://www.tdh.state.tx.us/newborn/sickle.htm This excellent web site has online information in Spanish and English

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

The Genetics Program of the State of Georgia : Georgia Newborn Screening Manual for Metabolic Diseases and Hemoglobinopathies. This document is available in Portable Document Format (PDF), which is available immediately via download:   http://www.ph.dhr.state.ga.us/publications/newbornscreening/index.shtml

Newborn screening at http://www.newbornscreening.com/ A site with news about newborn screening in the US

The Children's Hospital Oakland Sibling Donor Cord Blood Program at http://www.siblingcordblood.org./  is a non-profit program, funded by the National Institutes of Health. We facilitate the collection, transportation and storage of umbilical cord blood free of charge for eligible families. Most of our collections are done for families who are caring for a child with a transplant-treatable disease (such as sickle cell anemia, thalassemia or leukemia) and are expecting another child.

Bone-Stem Cell Transplant Web Sites

Bone Marrow Transplant Information Web site - This site is a comprehensive review of the latest news in bone marrow transplantation and stem cell transplantation.

 

  National Collaborative Study of bone marrow transplantation (BMT) for sickle cell anemia at http://www.sickle.fhcrc.org/

Transplants can cure sickle cell disease, says Center-led five-year clinical study at http://www.fhcrc.org/about/CenterNews/pubrel/CNews1996/Aug15/Multicenter.htm see a good animation of sickle red cells in a blood vessel.

 

The Cord Blood Registry Web Site - http://www.cordblood.com/ Cord Blood Registry is the nation's largest bank of umbilical cord blood stem cells -1200 Bayhill Drive, Suite 301, San Bruno, CA 94066 • Toll Free Tel: 888-267-3256 - 6 a.m. and 6 p.m Pacific Standard Time.

The Children's Hospital Oakland Sibling Donor Cord Blood Program at http://www.siblingcordblood.org./  is a non-profit program, funded by the National Institutes of Health. We facilitate the collection, transportation and storage of umbilical cord blood free of charge for eligible families. Most of our collections are done for families who are caring for a child with a transplant-treatable disease (such as sickle cell anemia, thalassemia or leukemia) and are expecting another child.

 

Pain Management Web Sites

The Mayday Pain Resource Center - City of Hope National Medical Center - This is an excellent site for information about pain assessment, treatment and resources including sickle cell pain management. There are links to other pain related sites.

 

Dannemiller Memorial Educational Foundation - The Worldwide Congress on Pain http://www.pain.com.This is a comprehensive site about pain management with many links to other good web sites.

 

The JCAHO New Pain Standards at http://www.jcaho.org/standard/stds2001_mpfrm.html These new standards for hospitals and clinics will improve the assessment and treatment of sickle cell patients in pain

The American Pain Society Announces New Sickle Cell Pain Guidelines (http://www.ampainsoc.org/) These guidelines are described and available for order at http://www.ampainsoc.org/whatsnew/083099.htm

Incidence and World Wide Distrubution 

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

Link to: The Human Genome Project Sickle Cell Education Site at http://www.massinteraction.org/html/genome/- This is a great site for students, teachers and patients who would like to know the origin of sickle cell disease. There are great graphics and well organized information.

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/genetics/hugenet/reviews/sickle.htm

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

 

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: December 15, 2004