United to Conquer Sickle Cell Disease

SCDC Update

November 28, 2016

This is a special issue of the SCDC Update, which highlights the sickle cell disease (SCD) related programs and opportunities at the 58th ASH Annual Meeting & Exposition, scheduled for December 3-6, 2016 in San Diego, California. This meeting is the world's premier event in malignant and non-malignant hematology. The meeting provides an invaluable educational experience and an opportunity to review thousands of scientific abstracts highlighting updates in the hottest topics in hematology. Attendees have the opportunity to network with top minds in the field, as well as a global community of more than 20,000 hematology professionals from every subspecialty, including SCD.

Special Blood  Sickle Cell Disease Compendium

The Blood journal, a publication of the American Society of Hematology, will be issuing a special compendium of SCD articles published in 2016 at the ASH Annual Meeting and Exposition. This series of articles include original research articles, up-to-date reviews of pathophysiology, diagnosis and treatment of SCD. A forward provided by ASH President Charles S. Abrams, MD, highlights the Call to Action on SCD, State of Sickle Cell Disease Report: 2016, and Sickle Cell Disease Coalition. We encourage all attendees to visit the ASH booth (#2715) Saturday, Sunday, or Monday to obtain your copy of the Compendium, as well as learn more about ASH, the Society’s SCD-related resources and programs.

Educational Sessions and Opportunities

Friday Satellite Symposia (FSS) - Improving Sickle Cell Disease Outcomes: Treatment Decision-Making, Curative Therapies, and Overcoming Barriers to Care

Friday, December 2, 7:30 – 11:00 a.m., San Diego Convention Center, Room 29, Upper Level

During this free CME breakfast symposium, SCD experts will explore in-depth data on the latest SCD treatment guidelines and outcomes, including new clinical trials, and insights into shared decision-making between providers and patients. A young adult who chose transplant to treat SCD will also share how she and her family worked with her care team to make this decision.

Speakers include Linda J. Burns, MD (moderator), Gregory J. Kato, MD, Lakshmanan Krishnamurti, MD, Ines Lukombo, transplant recipient, Marsha Treadwell, PhD, and Mark C. Walters, MD.

This program is sponsored by the Medical College of Wisconsin and supported by the National Marrow Donor Program®/Be The Match®. Pre-registration is encouraged, but not required. Register and learn more about the activity at BeTheMatchClinical.org/SCDsymposium.

Visit the ASH Website for additional information about other 2016 FSS sessions.

ASH Presidential Symposium - Sickle Cell Disease: New Biology, New Therapeutics

Tuesday, December 6, 9:45 – 11:15 a.m., San Diego Convention Center, Hall AB

This Symposium will provide an outlook on SCD describing the global burden of this disorder and a forward looking discussion on novel and promising approaches to permanently remedy this genetic disease. These gene-modifying approaches not only have capability to cure sickle cell anemia, but also serve as a paradigm on how we can harness our current knowledge of the human genome to treat a vast array of genetic disorders.

Speakers include Kwaku Ohene-Frempong, MD, who will describe the worldwide impact of this disorder; Gerd A. Blobel, MD, PhD, who will focus on how chromatin remodeling of the β-globin locus can enhance the production of hemoglobin F, thereby modifying the disease; Daniel E. Bauer, MD, PhD, who will discuss how BCL11A is an important regulator of hemoglobin F production, demonstrating how harnessing gene editing can selectively regulate the expression of BCL11A and hemoglobin F; and Giuliana Ferrari, PhD, who will describe the recent advances in gene therapy and how they can be applied to hemoglobinopathies including sickle cell anemia. Additional details are available here.

Educational Program - Sickle Cell Disease: Clinical Management

This program is offered twice:
Saturday, December 3, 9:30 – 11:00 a.m., Grand Hall B, Manchester Grand Hyatt San Diego
Saturday, December 3, 4:00 – 5:30 p.m., Seaport Ballroom EFGH, Manchester Grand Hyatt San Diego

This program will focus on three topics that clinicians are commonly addressing in their daily practice. The first presentation by Jo Howard, MB, BChir, will focus on when and how to transfusion individuals with sickle cell disease with a focus on non-neurological complications, including pregnancy, the pre-operative setting, acute chest syndrome, multiple episodes of acute vaso-occlusive pain episodes unresponsive hydroxyurea therapy. Michael R. DeBaun, MD, in the second presentation will emphasize optimal management of individuals with neurological complications in the absence of evidence from randomized controlled trials. The third presentation will be presented by Theodore Wun, MD, which will entail a discussion on the increasing evidence that activation of the coagulation system contributes to the pathophysiology of the common complications of sickle cell disease. In addition, new data on incident venous thromboembolism (deep venous thrombosis and pulmonary embolism) will be presented and proposition that sickle cell disease represents an inherited thrombophilia with implications for the duration of anticoagulation. Read more.

Educational Program - Mechanisms of Transfusion Alloimmunization

This program is offered twice:
Saturday, December 3, 4:00 – 5:30 p.m., Grand Hall B, Manchester Grand Hyatt San Diego
Sunday, December 4, 7:30 – 9:00 a.m., Grand Hall B, Manchester Grand Hyatt San Diego

This session will review recent advances in our understanding of host immune responses that result in transfusion alloimmunization and discuss how this knowledge can help identify biomarkers to predict in advance which patients will develop alloantibodies and potential therapeutic strategies to avert alloimmunization. Jeanne Hendrickson, MD, will review potential triggers for red blood cell alloimmunization in humans and mice, taking donor and recipient factors into consideration. The second presentation by James C. Zimring, MD, PhD, focuses on genetic and acquired host-related factors that can influence alloimmunization and discuss the use of several novel transfusion models to uncover cellular immune responses to transfused red blood cell products that result in alloimmunization. Lastly, Karina Yazdanbakhsh, PhD, will review cellular immune responses in chronically transfused patients with sickle cell disease, and discuss the role of hemolysis in sickle cell alloimmunization and novel strategies to reduce the risk of this complication. Read more.

Educational Program - Bone Marrow Transplant: Understanding and Improving the Risk Benefit Ratio

This program is offered twice:
Saturday, December 3, 9:30 – 11:00 a.m., San Diego Ballroom AB, Marriott Marquis San Diego Marina
Monday, December 5, 7:00 – 8:30 a.m., Pacific Ballroom 24-26, Marriott Marquis San Diego Marina

This session will review decisions in proceeding to an allogeneic hematopoietic stem cell transplant (HSCT) taking into account the risk of the underlying disease balanced against many factors, including the morbidity and mortality associated with the procedure, patient preferences, and therapeutic alternatives. In this educational session, Andrew Artz, MD, will discuss standard and novel prognostic tools that may aid in the selection of older HCT recipients and inform strategies to reduce transplant morbidity and mortality. Katayoun Rezvani, MD, PhD, will then discuss data on the KIR gene family as an independent second immunogenetic system, with significant influence on the outcome of allogeneic HSCT. Robert Jenq, MD, will conclude with a discussion of recent advances in the relationship between the microbiome and important outcomes after allogeneic transplant, including GVHD and relapse. He will also summarize clinical strategies that are being developed to offset the impact of microbiota injury. Read more.

Additional Sickle Cell Disease Programs

Scientific Program

The 2016 Scientific Committee Sessions will be held Saturday, December 3, and Sunday, December 4. Invited abstracts of these sessions will be published in the Program Book and on the flash drive containing the annual meeting abstracts. All Scientific Program sessions will be recorded and made available through ASH On Demand after the meeting, the following sessions will address SCD. Please note, each of the Scientific Programs are offered twice.

Understanding and Repairing Faulty Red Blood Cells
Saturday, December 3, 9:30 – 11:30 a.m., Room 6CDEF, San Diego Convention Center
Sunday, December 4, 9:30 – 11:30 a.m., Room 6CDEF, San Diego Convention Center

Fundamental insights into the relationships between gene structure and transcriptional control have driven the development of novel therapeutic approaches to red blood cell diseases, including sickle cell disease. These approaches represent a paradigm shift for future molecularly targeted therapies. This special session will focus on ongoing, state-of-the-art, studies of gene therapy strategies aimed at treating and curing hemoglobinopathies in humans.

Genomics in Transfusion Medicine
Saturday, December 3, 7:30 – 9:00 a.m., Seaport Ballroom ABCD, Manchester Grand Hyatt San Diego
Sunday, December 4, 9:30 – 11:00 a.m., Seaport Ballroom ABCD, Manchester Grand Hyatt San Diego

Genomic profiling of red cell and platelet antigens will allow more precise transfusion therapy and is poised to change transfusion practice. This session will discuss applying SNP typing and whole genome and exome sequencing to transfusion, with emphasis on patients receiving chronic transfusions.

Oral Sessions on Sickle Cell

The following oral and poster sessions feature the latest research in the field of sickle cell disease. New this year is PosterCast, a free smartphone app that will let meeting attendees to stream succinct 3-minute audio explanations of poster presentations. Also new this year is Second Screen, a new technology that will enable participant to see session slides on their personal devices for better viewing, especially with images that can be difficult to see from the back of a session room. This new technology is only available onsite and will also permit electronic Q&A. For more information on the Oral and Poster Sessions and the abstracts presented at the 2016 ASH Annual Meeting and Exposition please visit the ASH Annual Meeting page.

114. Hemoglobinopathies, Excluding Thalassemia—Clinical: Novel Insight Into The Epidemiology Of Sickle Cell Disease And Trait
Saturday, December 3, 7:30– 9:00 a.m., Room 7AB, San Diego Convention Center

114. Hemoglobinopathies, Excluding Thalassemia—Clinical: Emerging New Treatments in Sickle Cell Disease
Saturday, December 3, 2016, 12:00 – 1:30 PM, Room 28ABCD, San Diego Convention Center

401. Basic Science and Clinical Practice in Blood Transfusion – Mechanisms and Consequences of Red Blood Cell Alloimmunization
Saturday, December 3, 2016, 7:30 – 9:00 a.m., Room 31, San Diego Convention Center

901. Health Services Research—Non-Malignant Conditions: Anemia and Sickle Cell Disease
Sunday, December 4, 2016, 7:30 – 9:00 a.m., Seaport Ballroom EFGH, Manchester Grand Hyatt San Diego

114. Hemoglobinopathies, Excluding Thalassemia—Clinical: Optimizing Care Delivery In Sickle Cell Disease
Monday, December 5, 2016, 4:30 – 6:00 p.m., Room 6DE, San Diego Convention Center

Visit the Exhibit Hall as a Learning Opportunity

Visit the state-of-the-art exhibit hall – Halls C-F to see the latest technology and research and learn about a wide range of products and services offered by nearly 250 exhibitors. Exhibitors will include pharmaceutical companies, medical suppliers, clinical diagnostic and research-based companies, publishers, and nonprofit organizations. The following SCDC members will be exhibiting make sure to stop by their booths to learn more about their organizations and SCD-related work and programs:

Company Booth
AABB 3120
American Society for Clinical Pathology 3224
American Society of Hematology 2715
American Society of Pediatric Hematology/Oncology 3322
ApoPharma 2342
Bluebird bio 1701
FDA Office of New Drugs 4517
National Heart, Lung and Blood Institute 3215
National Marrow Donor Program 3015
Pfizer 3939

For a complete list of exhibitors click here.

Receptions & Events

ASH Promoting Minorities in Hematology: Presentations and Reception

ASH will host an event “Promoting Minorities in Hematology” on Saturday, December 3rd from 6:30 to 9:00 p.m. at the Marriott Marquis & Marina - Marina Ballroom F/G at the Annual Meeting and Exposition in San Diego, CA. The program includes scientific presentations of the 2016 ASH Minority Medical Student Award Program participants and will be followed by a reception that will include poster presentations by students participating in the National Heart, Lung, and Blood Institute’s Minority Research Supplement. There will also be an announcement about the newest recipients of the Minority Graduate Student Abstract Achievement Award and presentations by the ASH-AMFDP Award recipients. ASH-AMFDP is a partnership between ASH and the Harold Amos Medical Faculty Development Program of the Robert Wood Johnson Foundation. The event will conclude with a buffet dinner and networking.

ASH Run-Walk

The American Society of Hematology Foundation will sponsor a 3K/5K Run-Walk charity event along the scenic San Diego Embarcadero during the 2016 ASH annual meeting. This year, 100% of all proceeds from the ASH Foundation Run/Walk are designated to the ASH Sickle Cell Disease Initiative Fund which provides resources to help improve access to care for individuals with Sickle Cell Disease (SCD), advance SCD research, education and training programs, and address global issues related to SCD.

Due to San Diego city ordinance restrictions, this year’s Run/Walk registration is now full; however, you can still participate by donating to sponsor a runner or a team – donate here!

Save the Date

3rd Global Congress on Sickle Cell Disease

The Global Sickle Cell Disease Network (GSCDN) is bringing together leading sickle cell disease researchers and clinicians from high, middle and low income countries at its 3rd Global Congress on Sickle Cell Disease. This event will be held from February 21 to 24, 2017, in Bhubaneswar, Odisha, India. The Global Congress is held every two years and offers opportunities for the united engagement of SCD professionals and stakeholders and a multidisciplinary approach to improve health outcomes for people with sickle cell disease through the delivery of innovative solutions resulting from the highest quality of research and clinical care. To learn more or register click here.

SCDAA - Sickle Cell Disease Community Health Worker Certification Training

The Sickle Cell Disease Association of America, Inc. will be hosting its second Sickle Cell Disease Community Health Worker Certification Program, beginning January 30th. The seven week training will be held via webinar, Mondays and Wednesdays from 12PM-5PM EST. In addition to the online coursework, trainees must complete 80 hours of fieldwork (40 hours in a medical institution and 40 hours in a community organization). They must also pass a final exam. The training costs $800, plus the cost of the textbook. The application can be downloaded at http://www.sicklecelldisease.org/chw-training/. For any additional questions, please contact Lauren Whiteman at lwhiteman@sicklecelldisease.org or 410-528-1555.

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