United to Conquer Sickle Cell Disease

SCDC Update

New Resources: SCD Disparities Fact Sheet 

Did you know that the rate of stroke in African American adults, ages 35-64 years, with sickle cell disease (SCD) is three times higher than those of similar age without SCD? As a group, people with SCD experience worse health outcomes compared to other diseases and have access to fewer health resources. The CDC Foundation is raising awareness about these health disparities with a new fact sheet geared towards a general audience. The fact sheet also includes information about the Sickle Cell Data Collection (SCDC) program, which aims to use research findings to inform policy and health care changes that decrease health disparities for people with SCD. Share the new fact sheet available here.   

ASH Promotes SCD Clinical Care at SHM18

On April 9-10, 2018, the American Society of Hematology (ASH) highlighted sickle cell disease (SCD) in the exhibit hall at the Society of Hospital Medicine (SHM) annual conference in Orlando, Florida. The SHM annual conference is the premier educational event for healthcare professionals who specialize in hospital medicine and is the largest gathering of hospital medicine professionals in the world. The ASH exhibit educated attendees on the Society’s multifaceted SCD initiative, discussed the challenges that hospitalists face when treating patients with SCD, and provided SCD clinical resources. Dr. Laura De Castro, a SCD expert at the University of Pittsburgh, and an ASH member, answered SCD specific questions from attendees, and explained the benefits of using ASH’s pocket guide app, which includes three guides on SCD: Management of Acute Complications; Health Maintenance and Management of Chronic Complications; and Hydroxyurea and Transfusion Therapy for Treatment.

Red Blood Cell Exchange Patient Resource 

Terumo BCT, a member of the Sickle Cell Disease Coalition, has created a patient’s guide on how sickle cell disease (SCD) is managed with red blood cell exchange. If you or someone you care for has SCD, this educational brochure can help you better understand automated red blood cell exchange, a medical procedure used for transfusion management in SCD patients. 

Levine Cancer Institute Awarded $14 Million for Sickle Cell Care Improvement Effort   

Dr. Ifeyinwa Osunkwo (Levine Cancer Institute at Carolinas HealthCare System), Sickle Cell Adult Provider Network representative to the Sickle Cell Disease Coalition, and Dr. Raymona Lawrence (Georgia Southern University), will be leading two new initiatives to bolster sickle cell disease (SCD) outcomes. The Levine Cancer Institute has been awarded $14 million and Drs. Osunkwo and Lawrence are the principal investigators on these projects. The first $9.8 million grant awarded by the Patient Centered Outcomes Research Institute, will focus on assisting SCD patients as they transition from pediatric to adult care. The second $4.3 million grant awarded by the U.S. Health Resources and Services Administration, is focused on increasing provider knowledge about SCD and equipping them with the tools to provide care that can be accessible to patients who live in rural areas. To learn more, click here.

CDC’s “My Story” Series: Courtney Stinnett  

Read the latest edition in the Centers for Disease Control and Prevention series on Real Stories from People Living with Sickle Cell Disease, which highlights Courtney Stinnett’s story of not only managing her SCD pain episodes, but her son’s Cooley’s anemia.  “Living with sickle cell can be challenging and unpredictable, but I believe it makes us some of the strongest people on earth. The type of sickle cell disease (SCD) that I have is called hemoglobin S/beta(+)-thalassemia (also called sickle beta-thalassemia or HbS beta-thalassemia). Although it is a milder type of SCD, I still have pain episodes and other health issues. When I have a pain crisis, it can occur at any moment. It’s unpredictable. I can literally just start hurting all of a sudden. The only way I can describe a pain crisis is to compare it to a migraine headache, but it’s 10 times worse and located in the joints. I have gotten up in the morning feeling fine, driven to work, and could not get out of the car because of a pain crisis. The pain can be that sudden. I try to do things to avoid going into a crisis, but I cannot always prevent it from happening…” 

Upcoming SCD Events 

ASPHO Annual Conference 

The American Society of Pediatric Hematology/Oncology will be holding its annual conference on May 2-5, 2018, in Pittsburgh, PA. This annual conference will feature a diverse schedule that covers the breadth of the pediatric hematology/oncology and will feature original research presentations, expert-led sessions, maintenance of certification opportunities, and special interest group workshops that are open to all attendees. The conference will feature the following sickle cell disease (SCD) sessions, and paper presentations:

Primary and Secondary Stroke Prevention in Sickle Cell Disease: The Debate
Friday, May 4 11:45-1:15 PM  
Moderator: Rochelle Maxwell, MD; Clifford Takemoto, MD

Patients with SCD are at increased risk for stroke. Chronic packed red blood cell transfusions are an effective therapy for both secondary stroke prevention and primary stroke prevention with an abnormal transcranial Doppler. Bone marrow transplantation (BMT) is potentially curative and is also therapeutic option for SCD patients with stroke. In addition, the recently published TWiTCH trial demonstrated that hydroxyurea can be substituted for chronic transfusions for primary stroke prevention. Therapies such as BMT or hydroxyurea may be appropriate for selected patients therefore it is important that pediatric hematologists are aware of the appropriate indications for each.

Paper Session – Hematology
Thursday, May 3, 3:45 – 4:45 PM 

Neuroprotective Effects of Hydroxyurea in Sickle Cell Anemia: Maintenance of Normal Cerebral Oxygenation (paper-Charles Quinn)

Clinical Effect of SC411 (Altemia TM) on Children with Sickle Cell Disease in the Scot Trial:  A Phase 2 Randomized, Double-Blind, Placebo-Controlled, Parallel-Group, Dose-Finding Multi-Center Study (paper-Ahmed Daak (no CME)

Hemoglobinopathies Special Interest Group (SIG)
Thursday, May 3, 7:00 – 8:00 AM

Chairs: Howard Grodman, MD; Monica Hulbert, MD

The Hemoglobinopathies SIG aims to promote collaboration among pediatric hematologists/oncologists who care for children, adolescents and young adults with SCD and other hemoglobinopathies. It serves as a forum for clinical-care questions as well as research and advocacy initiatives. Additionally, the SIG aims to increase awareness of sickle cell trait status among pre-teens, adolescents, and young adults.

Click here for more information, and to register. 

A New Era in Sickle Cell Disease Conference 

The second biennial pediatric-adult regional sickle cell disease conference, A New Era in Sickle Cell Disease, will be held Saturday, May 19, 2018, at St. Jude Children’s Research Hospital, in Memphis, Tennessee. This conference is open to all health care providers, social workers, counselors, and others who provide health care for those with sickle cell disease (SCD). It is also open to SCD consumers, caregivers, and the public. Dr. Patricia Kavanagh, the Emergency Department Collaborative representative on the Sickle Cell Disease Coalition, will present on “Emergency Room Care for Sickle Cell Disease: Listening to Each Other.” Registration is free, but pre-registration is required. Click here to view the full agenda and register.

2018 Foundation for Sickle Cell Disease Research and Educational Symposium 

The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in sickle cell disease (SCD) to help maximize quality of life and improve survival for the generations of people affected by SCD. The next annual FSCDR symposium will take place June 15-17, 2018 in Washington, DC. Registration is now open.

SCDAA 46th Annual National Convention

The Sickle Cell Disease Association of America (SCDAA)’s 46th Annual National Convention will take place October 13-18, 2018 in Baltimore, MD. This year’s theme is Celebrating Diversity Within the Sickle Cell Community: Commitment, Innovation, Practice. The SCDAA Annual National Convention is a four-day conference designed to address the multi-factorial aspects of sickle cell disease (SCD). The conference fosters the exchange of the latest scientific and clinical information related to the disease which is achieved through the offering of innovative symposia, training seminars, and interactive panel discussions. In addition, this year’s convention offers an array of exciting activities designed to educate and motivate the entire community to get involved in the fight against SCD. The convention is aimed at individuals living with SCD and sickle cell trait, their family members, physicians, researchers, nurses, social workers, psychologists, and community health workers. Click here to find out more, and to register.  

Additional details will be forthcoming. If you have any questions please send them to Rusinel.amarante@nih.gov or Jessica.peterson2@nih.gov

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