Sickle cell information center web site update for june …

Sickle Cell Information Center Web Site Update for June 2005*

The Latest Information about Sickle Cell Disease and The Georgia Comprehensive Sickle
Cell Center in Atlanta, GA at http://www.SCInfo.org
*Oral liquid hydroxyurea promising for long-term use in babies with sickle cell anemia*
Memphis, Tennessee, June 15, 2005 - Treating babies who have sickle cell anemia (SCA) with
oral liquid hydroxyurea appears to prevent the onset of long-term complications triggered by this
disease, according to results of a preliminary study by investigators at St. Jude Children’s
Research Hospital.
http://www.stjude.org/media/0,2561,453_4187_18455,00.html
*African Wives Want Focus on Sickle-Cell -* By LOUIS OKAMBA Associated Press Writer
BRAZZAVILLE, Republic of Congo -- The wives of African leaders called Tuesday for the global
health community to focus on combating sickle-cell disease, an inherited blood disorder
particularly prevalent among those of African lineage.
Some 300,000 African children are born each year with the disease and 50 percent of them die
before the age of five, said Antoinette Sassou Nguesso, wife of the Republic of Congo President
Denis Sassou Nguesso.
"Why is this malady not considered as a public-health priority?" she asked attendees at a
symposium on the disease in the capital, Brazzaville.
Viviane Wade -- wife of Senegal President Abdoulaye Wade -- called on international
organizations to make contributions to support research and public health campaigns.
Eight percent of African-Americans have sickle-cell anemia, a blood abnormality that itself
evolved into a protection against the malaria that is Africa's No. 1 killer. Nigeria is believed to
have the world's highest number of sickle-cell sufferers, with 6 million of its 120 million-plus
people affected.
http://www.newsday.com/news/nationworld/world/wire/sns-ap-congo-sickle-
cell,0,7353185.story?coll=sns-ap-world-headlines
*Sickle cell patients are overcoming the odds - *
http://home.hamptonroads.com/stories/story.cfm?story=87707&ran=206027
<http://home.hamptonroads.com/stories/story.cfm?story=87707&ran=206027>
* *
*ETHNIC QUESTION &* *ANTENATAL SCREENING for* *SICKLE CELL/THALASSAEMIA*
*[EQUANS]* Policy Briefing Paper by Simon M Dyson Unit for the Social
Study of Thalassaemia and Sickle Cell De Montfort University Leicester - Click Here for a
PDF file to download
<http://scinfos.hostcentric.com/DysonPaper.pdf>
*Stem Cells To Go* - The use of Cord Blood Stem cells to treat sickle
cell disease
http://www.businessweek.com/magazine/content/05_26/b3939099_mz018.htm?chan=tc
*Sickle Cell Article Featured in Black Elegance Magazine* An article titled "The Rx on Sickle
Cell Disease and Iron Overload" by SCDAA President, Dr. Willarda V. Edwards will appear in the
July 2005 issue of Black Elegance magazine.
*Sickle Cell Information Center Newsletter Reaches *6,700 individuals in 61 around the
World. The email newsletter is now managed on the Emory
University Listserv Computer because of it's growth. Users can easily unsubscribe or join. The listserv removes old email addresses and duplicates. Web traffic to the Sickle Cell Information Center web site at www.SCInfo.org <http://www.SCInfo.org> in April 2005 neared 1 million hits for the month and averaged near 33,000 hits a day. April 2005 Web traffic: Successful requests (hit count): 982,787 Average successful requests per day: 32,760 Country Subscribers to the monthly newsletter * ------- ----------- * Antigua and Barbuda 1 * Argentina 1 * Armenia 1 * Australia 13 * Austria 1 * Bahamas 1 * Bahrain 4 * Belgium 5 * Benin 1 * Bermuda 3 * Brazil 16 * Brunei Darussalam 1 * Canada 61 * Costa Rica 1 * Cuba 5 * Cyprus 2 * Dominican Republic 1 * ??? (ED) 1 * France 20 * Gambia 4 * Germany 10 * Great Britain 129 * Greece 4 * Honduras 1 * India 15 * Iran 1 * Ireland 1 * Italy 11 * Jamaica 9 * Kenya 3 * Lebanon 2 * Luxembourg 1 * Malaysia 1 * Mauritius 1 * Mexico 2 * Moldova, Republic of 2 * Netherlands 3 * Nigeria 3 * Norway 2 * Oman 8 * Pakistan 2 * Portugal 3 * Saint Lucia 1 * Saudi Arabia 8 * Singapore 3 * South Africa 6 * Spain 1
* St. Helena 1
* Sweden 1
* Switzerland 2
* ??? (TX) 1
* Thailand 1
* Trinidad and Tobago 3
* USA 6,312
* Uganda 1
* United Arab Emirates 4
* Uruguay 1
* Yemen 2
* Zambia 6
* Zimbabwe 1
* ??? 19
*
* Total number of users subscribed to the list: 6731
* Total number of countries represented: 61
*Articles in the Medical Literature*

*June 2005*

Hankins JS, Ware RE, Rogers ZR, Wynn LW, Lane PA, Scott JP, Wang WC. Long-term
hydroxyurea therapy for infants with sickle cell anemia - the Husoft extension study.Blood. 2005
Jun 14;
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_ui
ds=15956277&query_hl=2
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_u
ids=15956277&query_hl=2>
Anie KA. Psychological complications in sickle cell disease. Br J Haematol. 2005 Jun;129(6):723-
9.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_ui
ds=15952997&query_hl=2
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_u
ids=15952997&query_hl=2>
Williams TN, Mwangi TW, Wambua S, Alexander ND, Kortok M, Snow RW, Marsh K. Sickle Cell
Trait and the Risk of Plasmodium falciparum Malaria and Other Childhood Diseases.J Infect Dis.
2005 Jul 1;192(1):178-186. Epub
2005 May 3
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_ui
ds=15942909&query_hl=2
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_u
ids=15942909&query_hl=2>
Akinyanju OO, Otaigbe AI, Ibidapo MO. Outcome of holistic care in Nigerian patients with sickle
cell anaemia. Clin Lab Haematol. 2005 Jun;27(3):195-9.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_ui
ds=15938726&query_hl=2
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_u
ids=15938726&query_hl=2>
Zumberg MS, Reddy S, Boyette RL, Schwartz RJ, Konrad TR, Lottenberg R. Hydroxyurea therapy for sickle cell disease in community-based practices: A survey of Florida and North Carolina hematologists/oncologists. Am J Hematol. 2005 Jun;79(2):107-13. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15929107&query_hl=2 <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15929107&query_hl=2> Buchanan ID, Woodward M, Reed GW. Opioid selection during sickle cell pain crisis and its impact on the development of acute chest syndrome.Pediatr Blood Cancer. 2005 May 30; http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15926170&query_hl=2 <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15926170&query_hl=2> Steen RG, Fineberg-Buchner C, Hankins G, Weiss L, Prifitera A, Mulhern RK.Cognitive deficits in children with sickle cell disease.J Child Neurol. 2005 Feb;20(2):102-7 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15794173&query_hl=2 <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15794173&query_hl=2> Kofi A Anie, PhD (UK), Joseph Telfair,DrPH, MSW/MPH (US) and the Sickle Cell Disease Transition Study Group (US/UK) Multi-site study of transition in adolescents with sickle cell disease in the United Kingdom and the United States INTERNATIONAL JOURNAL OF ADOLESCENT MEDICINE AND HEALTH Volume 17, No. 2 April - June 2005 (pages 169-78). *New Web Links* *June* *The Johns Hopkins Bloomberg School of Public Health's* OpenCourseWare (OCW) project, provides access to the School's most popular courses. http://ocw.jhsph.edu/ *Children's Healthcare of Atlanta (CHOA)* Sickle Cell Disease Program http://www.choa.org/default.aspx?id=2365 Bone Marrow transplantation for sickle cell disease in Atlanta http://www.choa.org/default.aspx?id=739 *Conferences and Activities of Interest to the Sickle Cell Community* * Accra, Ghana - **5th International African Symposium: July 19 to 22, 2005 * The Sickle Cell Center at The Children’s Hospital of Philadelphia and the Sickle Cell Foundation of Ghana would like to invite you to the 5th International African Symposium on Sickle Cell Disease. The Symposium will be held at the International Conference Center, Accra, Ghana. The Symposium, third in the series to be held in Accra (July 1995; July 2000), will address issues of clinical services and blood safety in the management of sickle cell
disease (SCD) in Africa. The main objective of the Symposium will be to explore strategies for
adopting practices that have proven successful in programs elsewhere for use in Africa.
Conference proceedings will be in English and French with simultaneous translation
In the 100 years since its modern discovery, major advances have been made in its diagnosis
and treatment. It is even possible to cure SCD through stem cell transplantation. However, many
of these advances in the management of SCD have occurred outside of Africa, the home of most
of the people born with SCD. Most people born with SCD in Africa probably die young without
ever being properly diagnosed. Can we improve clinical services for people with SCD born and
living in Africa? This symposium will address issues related to this topic. *Registration fee*
Participants from developed countries $250 Participants from developing countries (outside
Ghana) $100 Participants from within Ghana $50 Patients and Parents No Fee
For a registration form in Word, Click here
<http://scinfos.hostcentric.com/Ghana%202005%20ConferenceRegist.doc> or
abstract forms Click here for the abstract format
<http://scinfos.hostcentric.com/Ghanaabstract.doc> or you may contact: Janet Fithian:
[email protected]
<http://scinfos.hostcentric.com/Janet%20Fithian:%[email protected]> or (215) 590-2232
Trudy Tchume-Johnson: [email protected]
<mailto:[email protected]> or (267) 426-5037
Henrietta Enninful-Eghan: [email protected]
<mailto:[email protected]> or (267) 426-7492
Call for Abstracts (Receipt deadline: May 4, 2005)
Research scientists, clinicians, social and psychological experts are invited to submit abstracts for
presentation at the Symposium. Abstracts should be on work that is likely to be informative and
applicable to SCD programs in developingcountries. The following topics are suggested:
- Screening and follow-up
- Laboratory diagnosis
- Genetic counseling
- Management of clinical cases
- New therapies
- Health education
- Psychosocial case strategies
Travel, Hotel, Tour - Air travel, hotel lodging and tour of Ghana (and
other countries in Africa) will be organized by Prestige Tour & Travel
Promotion, Inc. http://flyprestige.com
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*Atlanta- GA activities*

July 29-Aug. 3 Camp New Hope sponsored by the Sickle Cell Foundation of
GA http://www.sicklecellatlaga.org/
September 24 Sickle Cell Night at Braves Game, Grady Sickle Cell Walk - TBA
October 8, 2005 Sickle Cell Education Day The Loudermilk Center Downtown Atlanta - an
annual event held in the fall for children with sickle cell disease and their parents and hosted by
the Atlanta Sickle Cell Consortium. Simultaneous parent and child (ages 5 plus) programs will
cover treatment updates, newest clinical advances and school health issues. Door prizes,
refreshments and lunch will be provided. Siblings and other family members are invited as well.
Please contact Tracy Winters at 404-785-2371 or [email protected]
<mailto:[email protected]>. http://www.choa.org/default.aspx?id=2365
October 22 Anchor's Fall Fashion Show – TBA Contact for Atlanta Anchors - Children Support Network: Clarence Matthews, President – (404) 387-2870 e-mail: [email protected] <mailto:[email protected]>_ Velma Rocquemore, Vice President - ((770) 435-3937 e-mail: [email protected] <mailto:[email protected]> ------------------------------------------------------------------------ *September 7 - 10, 2005* *SCDAA* 33rd Annual Convention Theme: "Strengthening Partnerships, Policies and Services" September 7 - 10, 2005 Baltimore, Maryland Renaissance Inner Harbor Hotel http://www.sicklecelldisease.org/ -- Allan Platt PA-C The Sickle Cell Information Center Web Site http://www.SCInfo.org

Source: http://www.sicklecelldisease.net/cbo/documents/update_20050621/2005june.pdf