August 29, 2014
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Sickle Cell News Round-Up

ATLANTA -  Sickle Cell Day Unit at Feist-Weiller Cancer Center in Shreveport LA  Provides Emergency Room Alternative http://www.feistweiller.org/index.php?src=gendocs&ref=Sickle_Cell_Unit&category=Patient_Care

A new three-bed day unit developed to care for sickle cell patients experiencing pain crises has been established at the Feist-Weiller Cancer Center (FWCC) outpatient building at LSU Health Shreveport and was formally dedicated Thursday, Jan. 20.

 The eighth such facility in the country designed to provide sickle cell patients a dedicated unit as an Emergency Room alternative, the FWCC unit will be staffed Monday-Friday from 8 a.m. to 4:30 p.m. Nights, weekends and holidays patients in sickle cell crisis will go to the LSU Hospital emergency room for care.

 Nebu Koshy, MD, Assistant Professor of Medicine, is medical director for the unit and Jennifer Angelo, MPAS, PA-C, is clinical coordinator.

 Patients receiving care in dedicated sickle cell facilities like the one recently established at FWCC have been found to have better experiences and can often control the pain crisis through day visits. 

New Sickle Cell Center coming to Bahrain

http://www.gulf-daily-news.com/NewsDetails.aspx?storyid=296414

A LONG-AWAITED centre for genetic blood disorders will be able to treat more than 14,000 patients once it opens its doors next year, it was declared yesterday.

The foundation stone of the new haematology centre was laid yesterday at Salmaniya Medical Complex (SMC). All patients suffering from sickle cell and other blood diseases will be treated at the BD2.5 million facility and will not require visiting the SMC's Accident and Emergency Department.

"This centre is like a mini-hospital with an emergency department as well as wards for men, women and children," said Health Minister Dr Faisal Al Hamer. "We are building this centre of excellence with 90 beds for patients suffering from blood diseases.

"This is a major milestone as there will be a dedicated facility for about 14,000 sickle cell disease patients as well as others."

Education of Minority Ethnic Pupils: Young People with Sickle Cell Disease - A project to examine the issues facing young people at school who live with sickle cell disorder  -   funded by the Economic and Social Research Council (Grant Number RES-000-23-1486) and ran from 2006 to 2011.

Project Summary - Sickle cell disease (SCD) is the collective name for a number of inherited blood conditions that mainly affect people of African, Caribbean, Middle Eastern, South Asian, and Mediterranean descent. Clinical manifestations include episodes of chronic and acute pain, and strokes. The known number of people living with SCD will increase from the current estimate of 15,000 over the next decade as all newborn infants and most pregnant mothers will be screened for SCD. Prior to this research little was known about the impact of sickle cell on the educational experiences of young people. Read the full report at  http://www.dmu.ac.uk/research/sickle-cell/research-evidence.jsp

Excellent Education materials available at : http://www.dmu.ac.uk/research/sickle-cell/

Sickle cell disease still deadly despite advances in medicine http://www.businessdailyafrica.com/Sickle%20cell%20disease%20still%20deadly%20despite%20advances%20in%20medicine/-/539444/1083592/-/vlbehn/-/

A century after the drawing of an anaemic patient’s sickle-shaped red blood cells came out of Chicago in the USA —a sketch that officially placed this still pervasive genetic disorder into medical books — confusion, discrimination and lack of treatment continue to surround sickle cell disease (SCD), especially in Africa where more than 200,000 babies are born every year with the disease.

“Sickle cell is a true public health problem with medical, human and social dimensions,” Oumar Ibrahima Touré, Mali’s health minister until earlier this month, told IRIN.

Despite advances in treatment and research over the past century, SCD is still largely undiagnosed in the world’s most affected areas where the problem is too complex for any quick-fix solutions, researchers say. And without treatment there is a 50 percent chance a sickle cell patient will die before the age of five, most commonly of a blood infection.

For its impact on lives and livelihoods, SCD has been deemed a “threat to the economic and social development of Africa” by the West Africa-based Federation of Associations Combating Sickle Cell Disorder in Africa (FALDA).

 

New "Fact Sheet" For School Staff Developed By Minnesota Children's Staff With Minnesota Department Of Education

: The "Other Health Disabilities" Coordinators from Minnesota Department of Education, Ms. Barbara Sisco and Ms. Joan Breslin-Larson, met together with Dr. Karen Wills, Ph.D., neuropsychologist for the Children's Hospital Sickle Cell Disease Program; Ms. Judi Azar, Physical and Other Health Impaired Coordinator for Minneapolis Schools; and Ms. Diane Graham, School Nurse; to redesign the state's "Fact Sheet" used by school personnel when developing educational and nursing care plans for children with sickle cell disease. The newly published Fact Sheet can be used to help teachers, school nurses, and other school personnel understand the needs of a child with sickle cell disease.  It can be accessed here:

http://education.state.mn.us/mdeprod/groups/SpecialEd/documents/Publication/019066.pdf

  New Article On Neuropsychological Assessment For Children With Sickle Cell Disease:  The "Scd-Plane" (Sickle Cell Disease Program for Learning and Neuropsychological Evaluation) at Children's Hospitals and Clinics of Minnesota is described in a special supplement to the journal, "Pediatrics" (available online at http://pediatrics.aappublications.org/cgi/content/full/126/Supplement_3/S151 or, the full citation for access from library services is Wills KE, Nelson SC, Hennessy J, Nwaneri MO, Miskowiec J, McDonough E, Moquist K. Transition planning for youth with sickle cell disease: embedding neuropsychological assessment into comprehensive care. Pediatrics. 2010 Dec;126 Suppl 3:S151-9. PubMed PMID: 21123479.

Here is the abstract:

 Transition Planning for Youth With Sickle Cell Disease: Embedding Neuropsychological Assessment Into Comprehensive Care

> Karen E. Wills, PhD(a), Stephen C. Nelson, MD(a), Jane Hennessy, RN, CPNP(a), M. Osita Nwaneri, MD(b), Joyce Miskowiec, BA(a), Elizabeth McDonough, RN(a), Kristin Moquist, RN, CPNP(a)

OBJECTIVE : Sickle cell disease (SCD) conveys a high risk of neuropsychological impairment due to chronic anemia, hypoxemia, cerebrovascular ischemia and stroke, in addition to causing pain and other biomedical complications. Few families accessed neuropsychological testing via the traditional referral system. In this paper, we describe a successful alternative strategy for addressing cognitive and behavioral needs of youth with SCD.

METHOD : The Sickle Cell Disease Program for Learning and Neuropsychological Evaluation (SCD-PLANE) was embedded in 2007 into the SCD Comprehensive Clinic of Children's Hospitals and Clinics of Minnesota. SCD-PLANE includes brief neuropsychological testing, individualized recommendations, patient education and advocacy, interdisciplinary collaboration, and follow-through to assure patients' access to recommended resources. The purpose of SCD-PLANE is to identify and recommend interventions for cognitive, academic, emotional, behavioral, or social problems affecting child development and transition to adulthood.

 RESULTS : Access to neuropsychological testing improved dramatically and is well accepted by SCD patients and families. Test results reveal increased risk of problems with executive function, speed of processing, graphomotor function, academic achievement, and parent-reported anxious/depressed symptoms, despite normal intelligence and language abilities. Patients' needs had not been previously identified or served by schools or other community agencies.

CONCLUSIONS : The SCD-PLANE, providing brief neuropsychological testing embedded within routine annual visits to SCD Comprehensive Clinic, is an effective approach to detect unmet developmental, educational, and behavioral needs within an underserved high-risk population. As youth move towards adulthood, considering cognitive, academic, and mental health status facilitates successful health care transitions.

New Article: Comparing Abstract Numerical and Visual Depictions of Risk in Survey of Parental Assessment of Risk in Sickle Cell Hydroxyurea Treatment

Patterson, Chavis A. PhD*,†; Barakat, Lamia P. PhD; Henderson, Phyllis K. LCSW*,†; Nall, Faith BA*; Westin, Anna MS§; Dampier, Carlton D. MD∥; Hsu, Lewis L. MD, PhDJournal of Pediatric Hematology/Oncology: January 2011 - Volume 33 - Issue 1 - p 4–9

Abstract Communicating risk is an important activity in medical decision-making; yet, numeracy is not a universal skill among the American public. We examined the hypothesis that numerical risk information about the use of hydroxyurea for children with sickle cell disease would elicit different risk assessment responses when visual depictions were used instead of abstract numbers and depending on the disease severity. Parents of 81 children with sickle cell disease participated in a survey in which hydroxyurea was first described as carrying a certain chance of risk for both birth defects and cancer. Then, the parents indicated the highest risk at which they would hypothetically consent to the treatment to help their child. Risk presentations were repeated with abstract numerical, pie graph, and 1000 people histogram formats. The χ2 analyses comparing high-risk to low-risk assessment across presentation formats showed high consistency between visual depictions but low consistency of abstract numerical with visual depictions. The parents of children with SC and other less severe types of SCD were less willing to accept higher risk than those with SS when the data were presented numerically. Given earlier concerns about poor “numeracy” in the US population, visual depictions of risk could be an effective tool for routine communication in health education and medical decision-making.

 News from the CDC –The Division of Blood Disorders

Fellow colleagues, you are invited to participate in the

“Public Health Webinar Series on Hemoglobinopathies”

Hosted by: The Division of Blood Disorders, CDC

4th Thursday of every month from 2:00PM – 3:00PM EST

The purpose of this webinar series is to offer a hemoglobinopathies

learning collaborative platform for providers, consumers, educators, and scientists.

This month’s webinar will take place on Thursday January 27th from 2:00pm – 3:00pm EST, featuring

Dr. Simon Dyson’s presentation on “Sickle Cell Disease and Education”

Please forward this announcement to other interested collaborators. 

 

To Join The Webinar

Copy this address and paste it into your web browser: https://www.livemeeting.com/cc/cdc/join

Copy and paste the required meeting ID: 84QK2D and click “join”.

First Time Users: To save time before the meeting, check your system to make sure it is ready to use Microsoft Office Live Meeting.

 For Audio

Dial 1-877-953-6706 and enter participant code: 9706616

If you are unable to join us on the internet for viewing, you are welcome to call in for audio access only.

Participants outside the United States must be able to access 800 numbers to the US. Otherwise, please RSVP the location and number of participants for alternative international conference line access.

 Hemoglobinopathies Webinar Schedule 2011

 

1/27: Sickle Cell Disease and Education

Dr. Simon Dyson, De Montfort University

 2/24: --- No Webinar This Month ---

 3/24: Iron overload in Children with Sickle Cell Disease

Dr. Tom Adamkiewicz, Morehouse College School of Medicine

 4/28: New Born Screening Engagement with the Community

Dr. Allyson Streetly, King’s College London

 5/26: Vitamin Deficiency and Sickle Cell Disease

Dr. Ifeyinwa Osunkwo, Children’s Healthcare of Atlanta

 6/23: Transfusion Issues for Sickle Cell Disease and Thalassemia Patients

Dr. Rebecca Kruse-Jarres, Tulane University School of Medicine

 7/28: Administrative Data Sets

Dr. Scott Grosse, CDC Division of Blood Disorders

 8/25: Emerging Pathogens and Blood Safety for Transfused Populations

Sean Trimble MPH, CDC Division of Blood Disorders

If you have ideas on topics for future webinars, or have any questions or comments about this series please submit them to Shae Pope spope@cdc.gov.

 

To subscribe to the CDC Blood Disorders List Serv:

Send an e-mail To:   listserv@cdc.gov

Do not put anything in the Subject line, leave it blank.

On the first line of the body of the message type: Subscribe Blood_Disorders your-last-name, your-first-name

Do not include anything else.  Delete any lines below the above line such as your signature line with address, phone, etc. 

Follow subsequent instructions in response e-mails from the list serv.

 

Memorial Healthcare System's Department of Sickle Cell Services Hosts the 5th Annual Sickle Cell Disease Research and Educational Symposium & Grant Writing Institute


Symposium Theme

Sickle Cell Disease - The Next Century

 Executive Committee

Kathryn Hassell, M.D., Lanetta Jordan, M.D. M.P.H., Gregory Kato, M.D.,

Solomon Ofori-Acquah, Ph.D., Betty Pace, M.D., Kim Smith-Whitley, M.D.

 

Official Symposium Site:  Floridasickle.org

 

PROGRAM HIGHLIGHTS
complete highlights at floridasickle.org

 

Clinical Vignettes Feature Audience Participation

This year the clinical vignette session will feature six presentations by experienced clinicians focused on such important topics as pain management, hyperbilirubinemia, aseptic necrosis of the hip, priapism, and stroke.  Each talk will feature an interesting case presentation illustrating the topic.


EDUCATIONAL SESSIONS HIGHLIGHTS - February 23 and 24, 2011

Sixteen educational sessions in four topic areas offer plenty of choices to gain knowledge in areas that have direct impact patient care and research in SCD.   Learn alongside colleagues dedicated to advancing the profession, hear from leaders in the field and share your experiences in these sessions.

 

February 23, 2011

BLOOD TRANSFUSION FOR SCD

Chair: Caterina MinnitiM.D.

a. Indications - Caterina Minniti, M.D.

b. Modalities: Simple vs. Exchange Transfusion - Kim Smith-Whitley, M.D.

c. Allo- and Auto-immunization - Marilyn Telen, M.D.

d. Blood Banking issues in Stem Cell Transplantation - Ross Fasano, M.D.
 

HB SC DISEASE

Chair: Martin Steinberg, M.D.

a. Clinical Features and Pathophysiology - Martin Steinberg, M.D.

b. Pathophysiology of Hb SC Erythrocytes - Mary Fabry, M.D.

c. Vasculopathy in Hb SC Disease - Gregory Kato, M.D.

d. Hydroxyurea, Clinical Trials & Treatment - Winfred Wang, M.D. 

 

February 24, 2011


IRON OVERLOAD

Chair: Samir K. Ballas, M.D.

a. Update on Iron Metabolism - Samir Ballas, M.D.

b. Methods to Diagnose Iron Overload - Jim Eckman, M.D.

c. Chelation Therapy - Patricia Adams-Gravess, M.D.

d. Thalasemia vs. Sickle Cell Anemia- Sophie Lanzkron, M.D.

 

RENAL COMPLICATIONS OF SCD

Chair: Cage Johnson, M.D.

a. Acute Renal Failure-Bea Files, M.D.

b. Chronic Renal Failure-Ward Hagar, M.D.

c. Proteinuria Speaker- Ken Ataga, M.D.

d. Data from the results from Walk-Phasst, in the context of kidney disease--mostly relevant to proteinuria and chronic kidney disease -Jane Little, M.D.










 

 

 

Sickle Cell Adult Provider Network Annual Symposium 2011

SICKLE CELL PAIN:  EXPANDING OUR UNDERSTANDING                      
Tuesday, February 22, 2011
1-6 p.m.
Westin Hotel, Hollywood Florida
Please go to the meeting website for details and to indicate if you would like to attend.
SCAPN PREMEETING SESSION

 

MEET THE EXPERTS BREAKFAST

Experienced sickle cell clinicians will be available to discuss vexing problems in clinical management over breakfast.  six experts will lead discussions on each of six complications: priapism, pulmonary hypertension, avascular necrosis, stroke, pain and women's health.  Bring your questions on difficult patient management issues and get input from experts.   

 1.    Priapism - Trinity Bivalacqua, M.D.    Johns Hopkins School of Medicine 

 2.     Pulmonary Hypertension - Gregory Kato, M.D.   National Institutes of Health 

 3.     Avascular Necrosis - Carolyn Hoppe, M.D.  Children's Hospital of Oakland, California

 4.    Pain - Samir Ballas, M.D.    Thomas Jefferson University 

 5.    Women's Health - Kathy Hassell, M.D.|University of Colorado 

 6.    Topic TBA (possibly hydroxyurea) - Winfred Wang, M.D.,  St. Jude's Children's Research Hospital

7.    Stroke - Expert Pending
 

 

 

NURSING SECTION

 

The nursing committee for the 5th Annual Sickle Cell Disease Research &  Educational Symposium is excited to be putting together a display to highlight the role of nurses in the care of individuals and families with sickle cell.

 

We would like to include nurses' responses to the following statement

Along with a picture of each nurse.

 

Statement:

 

In 30 words or less, please share your experience(s) as a sickle cell nurse. For example, you may want to include thoughts about your role: 1) Why you chose to be a nurse caring for individuals and families with sickle cell; or 2) What it means to be a sickle cell nurse.

 

We plan to develop a display titled "Sickle Cell Nurses in Words and Pictures" to display in a prominent position at the conference.

 

Nurses should e-mail responses/pictures to  

patcorle@usc.edu or skjones@med.unc.edu by January 31, 2011 in order to be included in the display.

 

FOCUS ON NURSING:

1.  In case you had not noticed, a new Abstract and Clinical Vignette category has been added this year:   "Nursing's Contributions to the Care of Individuals with Sickle Cell Disease and their Families"

 2.  The International Association of Sickle Cell Nurses and Physician Assistants (IASCNAPA) with hold their Annual Workshop and Meeting on Tuesday, February 22nd at 11:00am - 12:30 pm.
 

 

  SOCIAL WORKER'S BREAKFAST   FEBRUARY 24, 2011
 Topics    

Mental Health Services/Referrals   

Insurance

Advocacy
 
Transition (materials used)

Types of Assessments 
Adherence

Issue No.

GRANT WRITING INSTITUTE 

    ATTENDANCE STILL POSSIBLE! 
      email  LWHITEMAN@MHS.NET

         Chair Betty Pace, M.D.              Admissions Chair:  Marsha Treadwell, Ph.D.

           Complete Course Schedule Click  GWI Schedule
      
 
Grant Writing Institute
Memorial Healthcare System
The Westin Diplomat Resort & Spa, Hollywood, Florida
3555 South Ocean Drive Hollywood, FL 33019
United States Phone: (954) 602-6000

February 21-22, 2011

PURPOSE
The Grant Writing Institute (GWI) is designed to enable participants to submit a competitive grant application to a variety of funding agencies with specific emphasis on the National Institutes of Health (NIH), the Health Resources and Services Administration (HRSA) and the Center for Disease Control and Prevention (CDC). The Grant Writing Institute is open to all individ  are seeking to improve their grant writing skills and is not limited to research in sickle cell disease. Applicants will have the opportunity for one to one mentorship, including biostatistical assistance, on their specific proposal. Applicants who do not yet have a idea for a grant proposal are encouraged to attend the GWI. These "didactics" applicants will also receive instruction on the basics of grant-writing. "Didactics" applicants will also have the opportunity to participate in tracks, smaller group sessions that address their specific areas of interest. The tracks will allow for interaction with other participants with similar interests.

One to One Mentorship
Our qualified mentoring program will included a structured relationship between applicant and mentor. Applicants will be aligned with a mentor for specific aims. The goal is for the applicant to establish a long-term relationship with the mentor with regards to grants. The mentoring program is designed as an opportunity for applicants to enhance grant skills, knowledge, and ability. The relationship will focus on building support throughout the application process.

GWI Tracks
Track 1: Translational/Clinical Research- focus on the clinical application of scientific discoveries.

Track 2: Health Services Research- studies of how social factors, financing systems, organizational structures and processes, health technologies and personal behaviors affect access to health care, the quality and cost of health care, and quantity and quality of life.


STORY TAGS: BLACK NEWS, AFRICAN AMERICAN NEWS, MINORITY NEWS, CIVIL RIGHTS NEWS, DISCRIMINATION, RACISM, RACIAL EQUALITY, BIAS, EQUALITY, AFRO AMERICAN NEWS



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