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|Web Update - 2012-01 - January|
|News - Web Update - 2012-01 - January|
|Monday, 13 February 2012 11:21|
Sickle Cell in the News
American Society of Hematology Statement on Screening for Sickle Cell Trait and Athletic Participation January 26, 2012
The American Society of Hematology (ASH) represents approximately 16,000 physicians, scientists, and medical trainees committed to the study and treatment of blood and blood-related diseases. ASH members include clinicians who specialize in treating children and adults with sickle cell disease (SCD) and researchers who investigate the causes and potential treatments of SCD manifestations.
Sickle cell disease is an inherited blood disorder that affects 80-100,000 Americans, mostly but not exclusively of African ancestry. SCD causes production of abnormal hemoglobin, resulting in severe anemia, pain, other devastating disabilities, and, in some cases, premature death. SCD requires the inheritance of two defective globin genes. Eight to 10 percent of African Americans have sickle cell trait. Individuals with sickle cell trait do not have SCD, but are carriers of one defective gene associated with SCD. The majority of their hemoglobin is normal. Millions of Americans and hundreds of millions of individuals worldwide with the sickle cell trait enjoy normal life spans without serious health consequences. Rarely, clinical issues such as exertional rhabdomyolysis (the rapid breakdown of skeletal muscle due to injury to muscle tissue) have been reported in individuals with sickle cell trait. These incidents have generally occurred under extreme conditions such as severe dehydration and high intensity physical activity.
Universal preventive measures implemented by the U.S. Army to mitigate risk of exertion-related heat illness for all soldiers include heat acclimatization, monitoring work-rest cycles, guidelines for nutrition and hydration, and maintaining staff preparedness for early and rapid detection and treatment of heat illnesses. Using these universal guidelines, the death rate has been significantly lowered for all individuals undergoing training, including those with sickle cell trait. Similarly, governmental authorities in Brazil (which has similar sickle cell carrier rates as the U.S.) have promulgated guidelines to avoid heat-related injuries and see no need for athletes or military personnel to be screened for sickle cell trait.
ASH does not support testing or disclosure of sickle cell trait status as a prerequisite for participation in athletic activities. ASH believes that current scientific evidence does not justify this requirement. It is also not consistent with good medical practice or established principles of public health ethics. Screening for sickle cell trait should be voluntary and should take place in a setting that ensures privacy and is performed by a knowledgeable provider who is able to offer comprehensive counseling.
ASH recommends the implementation of universal interventions to reduce exertion-related injuries and deaths, since this approach can be effective for all athletes irrespective of their sickle cell status. Universal interventions are used successfully by organizations like the U.S. Army and the Brazilian military. Until the NCAA requires universal interventions, student athletes remain at risk for suffering from significant heat stress/exertion-related injury or death. Participation in athletics can be made safer with these measures, thereby rendering screening for and disclosure of sickle cell trait status unnecessary.
ASH believes that the NCAA Division I policy, as currently written and implemented, has the potential to harm the student athlete and the larger community of individuals with sickle cell trait. The NCAA policy attributes risk imprecisely, obscures consideration of other relevant risk factors, fails to incorporate appropriate counseling, and could lead to stigmatization and racial discrimination.
ASH strongly supports increased biomedical and population-based research on sickle cell trait as it relates to exertion-related illness, as well as other clinical conditions. New knowledge derived from research should benefit individuals with sickle cell trait and help inform public policy.
-Read the ASH press release about the Society's Policy Statement on Screening for Sickle Cell Trait and Athletic Participation
-Access a list of Frequently Asked Questions about sickle cell trait for medical experts and patients
The American Society of Hematology is the world’s largest professional society concerned with the causes and treatment of blood disorders. Its mission is to further the understanding, diagnosis, treatment, and prevention of disorders affecting blood, bone marrow, and the immunologic, hemostatic, and vascular systems by promoting research, clinical care, education, training, and advocacy in hematology. The official journal of ASH is Blood, the most cited peer-reviewed publication in the field, which is available weekly in print and online.
Sickle Cell Patient in New Movie- Joyful Noise
Williamstown, N.J. native Dexter Darden has a memorable supporting turn as Queen Latifah’s son Walter in the enjoyable new film Joyful Noise. The 20-year-old musician/actor holds his own on screen against both the Oscar-nominated actress and legendary country singer Dolly Parton. Darden, who grew up singing in church and at Victory Christian School, chatted with City Paper about getting his start from Paul Newman, Dolly Parton’s fried chicken and his favorite one-hit wonder. http://www.citypaper.net/blogs/criticalmass/QA-Joyful-Noise-star-and-New-Jersey-native-Dexter-Darden.html
Favorite Jersey shore spot: “I love Ocean City because my family always went down there. I am a HUGEEEEE Polish water ice fan, so every time I go down there, I have to get some.”
On the movie’s message: “The whole movie, in general, kind of applies to my life. The Ovations don’t let anything stop them. With having Sickle Cell Anemia, I always kept fighting and dreaming about making it.” http://site.suburbanfamilymag.com/articles/?articleid=239
High blood pressure, anemia put sickle cell kids at risk for strokes
A team of researchers from the Johns Hopkins Children’s Center, Vanderbilt University and elsewhere have demonstrated that high blood pressure and anemia together put children with sickle cell disease at serious danger for symptomless, or “silent,” strokes, although either condition alone also signaled high risk.
The results are part of an ongoing National Institutes of Health–funded international multicenter trial, believed to be the largest study of its kind to date in children with sickle cell disease, or SCD. A report on the findings was published online Nov. 17 in the journal Blood.
In the study, brain MRI scans revealed that nearly a third (31 percent) of 814 children, ages 5 to 15, had suffered silent strokes. None of the children had a history of stroke or seizures, and none showed overt stroke signs at the time of the study.
Extremely rare in children overall, stroke is a common neurologic complication in children with sickle cell disease, a genetic disorder marked by the “sickling,” or bending, of the red blood cells that store and distribute oxygen in the body. The misshapen blood cells cause anemia and also clog tiny blood vessels, causing pain, tissue damage and stroke. A stroke can occur when a blood vessel in the brain bursts or leaks (hemorrhagic stroke) or be caused by oxygen deprivation (ischemic stroke), the predominant kind of brain injury in children with SCD. Overt strokes lead to sudden dramatic symptoms, including excruciating headaches, one-sided paralysis of the face or body and loss of speech or vision. Silent strokes, by contrast, cause none of these overt symptoms but do cause subclinical brain damage, can lead to learning disabilities and put children who have them at risk for overt strokes and repeat episodes of silent strokes.
The new findings underscore the need to identify early signs of anemia and high blood pressure because they are modifiable risk factors, the researchers say. The findings also may pave the way for new therapeutic targets for SCD, which affects nearly 100,000 Americans.
Celine Dion, Caesars Entertainment and AEG Live Team Up for Special Evening with Children's Hospital Boston to Support "Play Without Pain: Children's Sickle Cell Benefit" Legendary Entertainer Pays Tribute to Cause With Touching Benefit Event; More Than $1 Million Raised for Sickle Cell Disease Research
Doctors at Children's Hospital Boston are just another step closer to securing a cure for sickle cell disease thanks to a little help from some superstar friends. More than $1 million was raised in support of their research efforts Sunday, January 15 during the "Play Without Pain: Children's Sickle Cell Benefit," a partnership with international megastar Celine Dion, Caesars Entertainment, AEG Live and Children's Hospital Boston. Held at Caesars Palace, the evening included a performance of Celine Dion's glamorous show directed by Grammy Awards producer Ken Ehrlich, including a touching tribute to sickle cell victims during her rendition of Billy Joel's "Lullabye."
To view the multimedia assets associated with this release, please visit: http://www.multivu.com/mnr/54153-celine-dion-play-without-pain-children-s-sickle-cell-benefit
A BD2.5 MILLION blood disease centre at Bahrain's main hospital
A BD2.5 MILLION blood disease centre at Bahrain's main hospital could be delayed by up to five months. The four-storey facility was due to open in July, but changes in the design mean it has been pushed back to the end of the year. Health Ministry engineering and maintenance director Mohammed Al Qahtani said work was now in full swing following the modifications.
"We had to create more facilities and some re-designing was required, so there has been a slight delay," he told the GDN. "The work is, however, progressing well and there are no other issues with construction."
The 90-bed facility will treat all patients with blood diseases, but will be of particular help for those suffering from sickle cell disease, said Mr Al Qahtani.
"This centre will be a major infrastructure development at Salmaniya Medical Complex (SMC) and will benefit hundreds of patients who suffer from blood diseases, particularly those who have sickle cell anaemia," he said. http://www.gulf-daily-news.com/NewsDetails.aspx?storyid=322074
New Book Resource
Genetics and Global Public Health: Sickle Cell and Thalassaemia Edited by Simon Dyson and Karl Atkin Routledge, February 2012 [ISBN-10: 0415698138, ISBN-13: 978-0415698139] Sickle cell and thalassaemia are among the world’s most common genetic conditions. Much research has focused on clinical, laboratory and genetic studies of these conditions. Through a wide-ranging selection of readings based on social scientific research into sickle cell and thalassaemia, this book seeks to redress this imbalance. This is important as, through an examination of the different social, economic and cultural contexts of the lives of people living with sickle cell or thalassaemia, the contributors demonstrate that people are more than the sum of their genes and that their life experiences are rarely derived solely from the clinical severity of their condition but depend on the social context of their lives. Available at http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Genetics+and+Global+Public+Health%3A+Sickle+Cell+and+Thalassaemia+&x=0&y=0
New Hemoglobinopathies Research Grant RFA
This Funding Opportunity Announcement (FOA) solicits five-year Cooperative Agreement (U54) grant applications to the Excellence in Hemoglobinopathies Research Award (EHRA) program. The primary objective of this new program is to support the development of studies that will accelerate high-impact multi-disciplinary basic and translational research in the hemoglobinopathies and facilitate maximal collaborations among basic and translational scientists and clinical hematologists located throughout the US or at international sites. An application must propose a single project that approaches a common scientific theme through innovative collaborations among investigators in two or more relevant disciplines, providing opportunities for research which will translate basic observations to applied clinical research. An EHRA application will also include a Translational Research Skills Development Core (TRC) for new investigators, an optional Summer Research Program for highschool students, and an Administrative Coordinating Center (ACC). One ACC will be selected from the awarded Centers to provide a range of administrative support to all the awardees. See http://grants1.nih.gov/grants/guide/rfa-files/RFA-HL-13-005.html
New Pain Education Grant RFP
The purpose of this Request for Proposals (RFP) is to fund the creation of Centers of Excellence in Pain Education. CoEPEs will act as hubs for the creation, development, evaluation, integration, promotion, and distribution of pain management curriculum resources, as well as be leaders for change in the pain management education of health professionals nationwide.
We seek to empower “Pain Champions”—those educators already working to improve pain education—as well as those needing additional resources and support to do so.
Each CoEPE will develop and promote high-quality, scientifically reviewed and evaluated educational resources for the teaching of pain management. Each CoePE will be expected to market its own resources as well as other resources developed through this initiative.
Eligible applicants include accredited medical, dental, nursing, and/or pharmacy professional schools. Collaborations among schools within institutions as well as between different institutions are encouraged, as are inter-professional curriculum resources that promote teamwork among medical, dental, nursing, and/or pharmacy professionals.
Applicants should think creatively about how to successfully integrate new resources on pain management into existing training programs. Collaborations among schools of medicine, dentistry, nursing, and/or pharmacy are encouraged, as are inter-institutional collaborations. For more information see http://www.altarum.org/project-highlights-pain-education
CDC Webinar 10/27: The Use of Hydroxyurea for Sickle Cell Disease by Dr. Nancy Green, Columbia University Medical Center in Windows Media Player at mms://realaudio.service.emory.edu/SOM/PA/PLATT/SICKLE/CDCHydrea.wmv
Schedule of Free CDC 2012 Webinars
1/26: Transition of Care for Sickle Cell Disease - Pediatrics to Adult Care
Dr. Ify Osunkwo, Children’s Healthcare of Atlanta
2/23: Medical Home Model for Sickle Cell Disease
Dr. Michael DeBaun, Vanderbilt University
3/22: Strategies from the Field – Community Partnership and Health Education-CDC’s Division of Blood Disorders and RuSH Project States
4/26: Sickle Cell – Adult Providers Network Dr. Kathryn Hassell, University of Colorado School of Medicine
5/24: Sickle Cell Disease and Emergency Department Use Dr. Paula Tanabe, Duke University School of Nursing
6/28: Sickle Cell Trait – What Every CBO Needs to Know Dr. Lanetta Jordan, Memorial Regional Hospital
7/26: Improved Survival of Children and Adolescents with Sickle Cell Disease Dr. Charles Quinn, Cincinnati Children's Hospital Medical Center
8/23: Translating Research to Policy Dr. Shawn Bediako, University of Maryland, Baltimore County
9/27: Improving Quality of Care for Sickle Cell Pediatrics in the Emergency Department Dr. James Moses, Boston Medical Center
10/25: Strategies from the Field – Data Collection and Harmonization CDC’s Division of Blood Disorders and RuSH Project States
November/December: --- No Webinars---
See all the previous CDC Sickle Cell Webinars and instructions to view or listen to future events see: http://scinfo.org/world-wide-resources/cdc-webinars-hemoglobinopathies-and-public-health
John Hopkins - Urban Health Radio Program (UHRP)
"Breaking It Down: Our Health Our Way" Features Sickle Cell talks in February
Free ASH webinars http://hematology.org/Meetings/Webinars/6832.aspx
Articles for January
Sickle Cell Conferences
Leaping Ahead in Sickle Cell Disease Research and Care
6th Annual Sickle Cell Disease Research and Educational Symposium & Annual National Sickle Cell Disease Scientific Meeting
March 12 -16, 2012 Atlanta GA The 2nd National Conference on Blood Disorders in Public Health March 12-14, 2012,
The Conference of the Global Sickle Cell Disease Network, March 15, 2012 The 2nd Meeting of the Worldwide Initiative on Social Studies on Hemoglobinopathies, March 16, 2012 The Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention; the Maternal and Child Health Bureau, Health Resources and Services Administration; the Division of Blood Diseases and Resources, National Heart, Lung, and Blood Institute, National Institutes of Health; the American Society of Hematology; and Hemophilia of Georgia are pleased to announce the 2nd National Conference on Blood Disorders in Public Health.
We are pleased to announce that this conference is being held in conjunction with the Conference of the Global Sickle Cell Disease Network (scheduled for Thursday March 15, 2012) and the 2nd Meeting of the Worldwide Initiative on Social Studies on Hemoglobinopathies (WISSH - scheduled for Friday March 16, 2012). Announcements and calls for abstracts for these two meetings will be posted separately. Agenda at https://www.signup4.net/Upload/VISI10A/2NDN10E/Draft%20Program%20Agenda%2012-5-2011.pdf
May 4, 2012 Sickle Cell Disease: Overview and Update New York NY 7:30 AM- 5 PM
24th May - 25th May 2012 Event name: Sickle Cell in Focus 2(SCiF)
Venue: King’s College London Guy’s campus, London
Programme Director: Professor Swee Lay Thein, King’s College London / King’s College Hospital, UK
Description: Sickle Cell in Focus is an annual, two-day intensive educational conference held to highlight and discuss emerging clinical complications and management of sickle cell disease. The clinical and scientific lectures are aimed at consultants, trainee doctors and other health professionals involved in the care of patients with the disease and academic researchers in this field. It attracts local, national and international guest speakers and delegates.
July 5-7, 2012 Venetian / Palazzo Hotel Las Vegas - Association of Nigerian Physicians in the Americas
“The 18th Annual ANPA Convention & Scientific Assembly will be held July 5-7, 2012 at the Venetian / Palazzo Hotel in Las Vegas, Nevada. The theme for this year’s assembly will be “Righting the Wrong in Sickle Cell Disease”, and “Information Technology in Medical Practice”. The ANPA Annual Meeting features three full-day meetings, providing participants’ knowledge related to the challenges facing minority health care providers in the provision of clinical and therapeutic services for diseases and conditions related to a variety of medical specialties. The meeting will feature member lecturers providing state of the art technological advances that will impact the practice of medicine. The annual convention is of great value to our membership and other health care professionals by providing them with opportunities to keep abreast of developments in various areas of health care delivery and also offering continuing medical education (CME) credits. For more information please visit www.anpa.org or call 913.402.7102. “