Reducing Complications of Therapeutic Blood Transfusion in Sickle Cell Disease
Video teaching course for CEU/CME
PROGRAM DESCRIPTION: Activities are designed to increase knowledge and change competency of transfusion practices and strategies for individuals with hemoglobin disorders. Content is derived from actual peer-reviewed publications.
Understanding the Impact of Sickle Cell Disease
This infographic for sickle cell awareness was produced by the new Sickle Cell Disease Coalition, formed by American Society of Hematology.
FDA Campaign for Clinical Trial Diversity
FDA is releasing six public service announcements, a blog, and an infographic to encourage people of diverse races and ethnicities to participate in clinical trials.
You can be a #ClinicalTrialsChampion by sharing these resources far and wide! Spread the word: a person’s race or ethnicity can affect how his or her body responds to medicine.
NIH RePORTER: Federally-Funded Sickle Cell Research
View NIH RePORTER’s list of funded sickle cell research.
Johns Hopkins University: Vision of Hope-Integration of Palliative Care in Chronic Pediatric Disease
The Vision of Hope curriculum was motivated by a commitment to integrate the principles of pediatric palliative care to sickle cell disease and duchenne muscular dystrophy. Pediatric Palliative Care seeks to provide evidence-based curricular materials to institutions. It incorporates emotional, spiritual, developmental, and physical dimensions creating a holistic approach to care. The Johns Hopkins Berman Institute has created 11 modules to help guide healthcare providers on this approach. Scroll down on the linked page and click the sickle cell link to view the different resources.
Click here to visit the site: http://www.bioethicsinstitute.org/research/projects-2/hope
MedlinePlus en Español
La anemia falciforme es una enfermedad en la que su cuerpo produce glóbulos rojos con forma anormal. Las células tienen forma semilunar o de una hoz. Estas células no duran tanto como las normales, los glóbulos rojos redondos. Esto causa la aparición de anemia. Las células falciformes también se atascan en los vasos sanguíneos y bloquean el flujo. Eso puede provocar dolor y lesionar los órganos.
Treatment and Prevention
A thankful teenager, Keon Penn of Atlanta celebrates his 14th birthday after being declared “cured” from sickle cell disease. Two years ago Keon underwent the world’s first unrelated stem-cell transplant at Egelston Children’s Hospital in Atlanta on December 11, 1998. Read more…
Sickle Cell Anaemia and Malaria
Luzzatto, L (2012). Mediterr J Hematol Infect Dis. 2012; 4(1): e2012065. Read more on PubMed
Find out what Clinical Trials for Sickle Cell are Taking Place Around the World!
A searchable map offered by ClinicalTrials.gov
American Society of Hematology (ASH) Pocket Guides for Sickle Cell Disease
Three downloadable pocket guides presented by ASH in 2014, adapted from the National Heart, Lung, and Blood Institute’s Evidence Based Management of Sickle Cell Disease: Expert Panel Report, 2014:
Sickle Cell in Brazil
Sickle Cell in Brazil – Powerpoint
NIH Evidence Report: Evidence-Based Management of Sickle Cell Disease
The purpose of the “Evidence-Based Management of Sickle Cell Disease: Expert Panel Report (EPR), 2014” is to synthesize the available scientific evidence on sickle cell disease and offer guidance to busy primary care clinicians. Download the full report or individual chapters.
Template for Patient & Family Needs Assessment
This form is designed to help facilitate understanding of the family’s circumstances, knowledge of sickle cell disease, and satisfaction with health care and to identify patient and family concerns and potential barriers to appropriate treatment. It should be completed by the family when the child is not ill (e.g. in the waiting room prior to a clinic visit) and subsequently reviewed with the family by a health care provider.
Portuguese Sickle Cell Guide for Health Care Providers from Brazil
Portuguese Guidebook about Sickle Cell Disease for Healthcare Providers
By Dr.Heloisa Helena Arantes Gallo da Rocha, a Hematologist in Brazil
Care Paths and Protocols for Children and Adolescents
Peter A. Lane, George R. Buchanan, John J. Hutter, Robert F. Austin, Howard A. Britton, Zora R. Rogers, James R. Eckman, Michael R. DeBaun, Winfred C. Wang, Prasad Mathew, Sarah Iden, Michael Recht, Jesse D. Cohen, Ernest Frugé, Leanne Embry, Lewis Hsu, Brigitta U. Mueller, Robert Goldsby, Charles T. Quinn, Marie Mann, and Michele A. […]
Problem Oriented Clinical Guidelines
By James Eckman, M.D. and Allan Platt, PA-C These guidelines are updated copies from the book: “Problem Oriented Management of Sickle Cell Syndromes”, originally published in 1991 using grant support from the Genetic Services Branch of the Maternal and Child Health Bureau, U.S. Department of Health and Human Services (Grant MJC-131003-04), The Southeastern Regional Genetics […]