Sickle Cell News Round-Up
*www.SCInfo.org gets a new design*
In 1991 the clinical guidelines developed in the 24 hour Georgia
Comprehensive Sickle Cell Center at Grady Health System in Atlanta were
published
in a handbook titled Problem Oriented Management of Sickle Syndromes.
The handbook was funded by HRSA’s Maternal and Child Health Bureau
and distributed worldwide. Because of the Internet’s potential for more
widespread, cost-effective education, in 1998 these guidelines were included
on a new Emory University website called The Sickle Cell Information
Center (www.SCInfo.org.)
Since that time, this website has been online continuously and has
attracted visitors from around the globe. Contents maintained by Allan
Platt, PA-C,
with input from James Eckman, MD,SERC Hemoglobinopathies Workgroup
Chair, and Lewis Hsu, MD, PhD. Current content areas include:
The website currently receives 500,000 hits a month. The monthly e-mail
news update, which provides readers with the latest news in research,
education,
and clinical care, has grown from 1,500 participants in 2001 to 4,500 in
2010. The site is on the first page of results for the Google search
engine for the
term “sickle cell” and has “Health on the Net” certification.
The website is currently being updated, upgraded to new servers, and
modernized, using a web-based content management system to provide
better content, links and functionality.In addition to these
improvements, a new website template was created to give the Sickle Cell
Information Center a clean, updated look. The site
overhaul is being led by Adrya Stembridge, an application developer
responsible for the SERC- South East Regional Collaborative website
(www.southeastgenetics.org), as well as the State of Georgia Newborn
Screening Follow-up program database. Many thanks to HRSA, Georgia
State, and SCAPN for making the update possible
Check out the new site at http://www.SCInfo.org
*
Other News*
* Did Sickle Cell Disease kill King Tutankhamun'?
http://news.discovery.com/archaeology/tut-pharaoh-blood-disease.html
* A University of Minnesota Medical School research team led by
Kalpna Gupta, Ph.D., has discovered that cannibinoids offer a
novel approach to ease the chronic and acute pain caused by sickle
cell disease (SCD).
http://www.eurekalert.org/pub_releases/2010-07/uom-uri072210.php
* A Johns Hopkins University scientist, whose team of researchers
recently identified pneumonia, diarrhea, and malaria as the
primary causes of death of 6 million of the world's poorest
children, today called on leaders in donor and developing nations
to take action to address the terrible death toll.
http://www.eurekalert.org/pub_releases/2010-07/bc-abf071610.php
* Health Activist Webinar: Sickle Cell Disease: Understanding Pain
Management and Iron Overload http://www.wegohealth.com/scdwebinar
*Medical Articles*
1.
The Impact of Recurrent Acute Chest Syndrome on the Lung Function of
Young Adults with Sickle Cell Disease.
<http://www.ncbi.nlm.nih.gov/pubmed/20644948>
Knight-Madden JM, Forrester TS, Lewis NA, Greenough A.
Lung. 2010 Jul 20. [Epub ahead of print]
PMID: 20644948 [PubMed - as supplied by publisher]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20644948>
2.
RH genotyping in a sickle cell disease patient contributing to
hematopoetic stem cell transplantation donor selection and management.
<http://www.ncbi.nlm.nih.gov/pubmed/20644109>
Fasano RM, Monaco A, Riehm Meier E, Pary P, Lee-Stroka AH, Otridge J,
Klein HG, Marincola FM, Kamani NR, Luban NL, Stroncek D, Flegel WA.
Blood. 2010 Jul 19. [Epub ahead of print]
PMID: 20644109 [PubMed - as supplied by publisher]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20644109>
3.
Region-Specific Genetic Heterogeneity of HBB Mutation Distribution in
South-Western Greece. <http://www.ncbi.nlm.nih.gov/pubmed/20642331>
Papachatzopoulou A, Kourakli A, Stavrou EF, Fragou E, Vantarakis A,
Patrinos GP, Athanassiadou A.
Hemoglobin. 2010;34(4):333-42.
PMID: 20642331 [PubMed - in process]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20642331>
4.
Hearing impairment in persons with the hemoglobin SC genotype.
<http://www.ncbi.nlm.nih.gov/pubmed/20628988>
Onakoya PA, Nwaorgu OG, Shokunbi WA.
Ear Nose Throat J. 2010 Jul;89(7):306-10.
PMID: 20628988 [PubMed - in process]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20628988>
5.
Public awareness of sickle cell disease in Bahrain.
<http://www.ncbi.nlm.nih.gov/pubmed/20622345>
Al Arrayed S, Al Hajeri A.
Ann Saudi Med. 2010 Jul-Aug;30(4):284-8.
PMID: 20622345 [PubMed - in process]* Free Article *
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20622345>
6.
Newborn screening for hemoglobinopathies using capillary electrophoresis
technology: Testing the Capillarys(R) Neonat Fast Hb device.
<http://www.ncbi.nlm.nih.gov/pubmed/20621075>
Mantikou E, Harteveld CL, Giordano PC.
Clin Biochem. 2010 Jul 15. [Epub ahead of print]
PMID: 20621075 [PubMed - as supplied by publisher]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20621075>
7.
Diastolic dysfunction in sickle cell.
<http://www.ncbi.nlm.nih.gov/pubmed/20616222>
Kato GJ, Sachdev V.
Blood. 2010 Jul 8;116(1):1-2.
PMID: 20616222 [PubMed - in process]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20616222>
8.
Chemical genetic strategy identifies histone deacetylase 1 (HDAC1) and
HDAC2 as therapeutic targets in sickle cell disease.
<http://www.ncbi.nlm.nih.gov/pubmed/20616024>
Bradner JE, Mak R, Tanguturi SK, Mazitschek R, Haggarty SJ, Ross K,
Chang CY, Bosco J, West N, Morse E, Lin K, Shen JP, Kwiatkowski NP,
Gheldof N, Dekker J, DeAngelo DJ, Carr SA, Schreiber SL, Golub TR, Ebert BL.
Proc Natl Acad Sci U S A. 2010 Jul 13;107(28):12617-22. Epub 2010 Jun 28.
PMID: 20616024 [PubMed - in process]* Free Article *
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20616024>
9.
Exchange transfusion before cardiopulmonary bypass in sickle cell
disease. <http://www.ncbi.nlm.nih.gov/pubmed/20609818>
Bocchieri KA, Scheinerman SJ, Graver LM.
Ann Thorac Surg. 2010 Jul;90(1):323-4.
PMID: 20609818 [PubMed - in process]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20609818>
10.
Portacaths are safe for long-term regular blood transfusion in children
with sickle cell anaemia. <http://www.ncbi.nlm.nih.gov/pubmed/20605863>
Bartram JL, O'Driscoll S, Kulasekararaj AG, Height SE, Dick M, Patel S,
Rees DC.
Arch Dis Child. 2010 Jul 6. [Epub ahead of print]
PMID: 20605863 [PubMed - as supplied by publisher]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20605863>
11.
Alpha-thalassemia is associated with a decreased occurrence and a
delayed age-at-onset of albuminuria in sickle cell anemia patients.
<http://www.ncbi.nlm.nih.gov/pubmed/20598923>
Nebor D, Broquere C, Brudey K, Mougenel D, Tarer V, Connes P, Elion J,
Romana M.
Blood Cells Mol Dis. 2010 Jul 1. [Epub ahead of print]
PMID: 20598923 [PubMed - as supplied by publisher]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20598923>
12.
Stress reactivity as a moderator of family stress, physical and mental
health, and functional impairment for children with sickle cell disease.
<http://www.ncbi.nlm.nih.gov/pubmed/20585265>
Treadwell MJ, Alkon A, Quirolo KC, Boyce WT.
J Dev Behav Pediatr. 2010 Jul-Aug;31(6):491-7.
PMID: 20585265 [PubMed - in process]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20585265>
13.
Effects of hydration and dehydration on blood rheology in sickle cell
trait carriers during exercise.
<http://www.ncbi.nlm.nih.gov/pubmed/20581085>
Tripette J, Loko G, Samb A, Doubi Gogh B, Sewade E, Seck D, Hue O,
Romana M, Diop S, Diaw M, Brudey K, Bogui P, Cissé F, Hardy-Dessources
MD, Connes P.
Am J Physiol Heart Circ Physiol. 2010 Jun 25. [Epub ahead of print]
PMID: 20581085 [PubMed - as supplied by publisher]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20581085>
14.
Effect of L-arginine supplementation on immune responsiveness in
patients with sickle cell disease.
<http://www.ncbi.nlm.nih.gov/pubmed/20582959>
Scavella A, Leiva L, Monjure H, Zea AH, Gardner RV.
Pediatr Blood Cancer. 2010 Aug;55(2):318-23.
PMID: 20582959 [PubMed - in process]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20582959>
15.
Pain rate and social circumstances rather than cumulative organ damage
determine the quality of life in adults with sickle cell disease.
<http://www.ncbi.nlm.nih.gov/pubmed/20575034>
van Tuijn CF, van Beers EJ, Schnog JJ, Biemond BJ.
Am J Hematol. 2010 Jul;85(7):532-5. No abstract available.
PMID: 20575034 [PubMed - in process]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20575034>
16.
Red blood cell deformability and aggregation, cell adhesion molecules,
oxidative stress and nitric oxide markers after a short term,
submaximal, exercise in sickle cell trait carriers.
<http://www.ncbi.nlm.nih.gov/pubmed/20571229>
Tripette J, Connes P, Beltan E, Chalabi T, Marlin L, Chout R, Baskurt
OK, Hue O, Hardy-Dessources MD.
Clin Hemorheol Microcirc. 2010;45(1):39-52.
PMID: 20571229 [PubMed - in process]
Related citations
<http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=link&linkname=pubmed_pubmed&uid=20571229>
17 *Evidence-Based Sickle Cell Pain Management in the Emergency Department*
Advanced Emergency Nursing Journal: April/June 2010 - Volume 32 - Issue
2 - p 102–111
http://journals.lww.com/aenjournal/Abstract/2010/04000/Evidence_Based_Sickle_Cell_Pain_Management_in_the.2.aspx
*
**Grants*
*RFA *- Innovators in Hemoglobinopathies Academic Career Development
Award (K07) http://grants1.nih.gov/grants/guide/rfa-files/RFA-HL-10-021.html
*Ask the Experts*
The Virginia Dept of Health recently distributed a packet called Transition Intervention Program (TIP) for sickle cell adolescents. It
includes several modules and assessments on topics like - sickle cell medical history, presenting your medical issues in an appt, STD,
insurance, job interview, genetics. Parts were tested at Hosp for Kings Daughters in Norfolk and VCU in Richmond. Other parts were tested by Dr.
Joseph Telfair in North Carolina. It just came out in April 2010. All of the pediatric comprehensive sickle cell centers in Virginia are
supposed to start using it, so I learned of it because I help with the sickle cell patients in the Children's National Medical Center site in
Fairfax, VA.
You can request TIP from
Theresa Taylor
Virginia Dept of Health
804-864-4451
Theresa.taylor@vdh.virginia.gov
Lewis Hsu MD PhD
*Upcoming Events
*
*August 23** -27 Bethesda, MD *- NIH Annual Sickle Cell Disease Clinical
Research Meetings http://www.nhlbi.nih.gov/meetings/sicklecell-10/index.htm
**September 21-24, 2010 Washington DC - SCDAA 38th Annual Convention **
Gaylord National Hotel & Conference Center Washington D.C. Sickle Cell
Disease Association of America, Inc.
<http://r20.rs6.net/tn.jsp?et=1103165787030&s=1433&e=001XbyGzYjKDfcA92Nd1IbrI-z6laB2Q8stCkYdjQ9lWfqxK8gw2pJJIg3u6VfdiRkSuWbgoNmHZL81eN1kDrnDPWAapGbBnqZfjlORkBtbd2Q8-oS6T8uj-7CMtN646cN0>http://www.scdaaconvention.com/
This conference is designed for patients, parents, health care
providers, administrators, educators, advocates, researchers and
community-based organizations. The focus is on strengthening the
infrastructure of the sickle cell community through education and
action; fostering advocacy and collaborative networks with the best
possible programs, practices and policies that result in prevention of
illness, improvement of the quality of life of affected persons, and
finding a cure for Sickle Cell Disease.
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*October 4 Atlanta GA *- Sickle Cell Education Day 9 - 3 - Loudermilk
Center: 40 Courtland Street, Atlanta, GA 30303
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*22 - 27 November 2010— Raipur (Chhattisgarh) * * India** - S*ickle Cell
Disease International Organization in collaboration with Centre for
Genetic Diseases & Molecular Biology Department of Biochemistry,* * Pt.
J.N.M. Medical College, Raipur (C.G.) INDIA are organizing the Fourth
International Congress 2010* *Sickle Cell Disease International
Organization http://4sccongress.co.in <http://4sccongress.co.in/>
*Nov. 16 and 17 Bethesda, Maryland* The Herrick Symposium will be held on Nov. 16 and 17 (Tuesday and Wednesday) at the NIH campus in Bethesda, Maryland. Registration is now open at http://www.nhlbi.nih.gov/meetings/James-Herrick-Sicklecell/index.htm
*Feb 23-25 , 2011 Hollywood FL* - 5th Annual Sickle Cell Disease Research and Educational Symposium and Annual National Scientific Meeting - Westin Diplomat Resort and Spa, Holly wood FL. Feb 21 - 22 Grant Writing Institute http://floridasickle.org/
