United to Conquer Sickle Cell Disease

SCDC Update, May 2017


Explore Free SCD Educational Resources

The National Marrow Donor Program® (NMDP)/Be The Match® has a number of sickle cell disease (SCD) resources available for physicians and health professionals:

On-Demand CME: Improving Sickle Cell Disease Outcomes
Discover new models for clinical decision-making in SCD through a free on-demand CME activity. SCD experts address treatment guidelines and outcomes for SCD, clinical trials, and strategies for overcoming barriers to improve patient care. A young adult who chose a transplant to treat SCD also shares how she and her care team made this decision. Speakers include Linda J. Burns, M.D., Gregory J. Kato, M.D., Lakshmanan Krishnamurti, M.D., Ines Lukombo, transplant recipient, Marsha Treadwell, Ph.D., and Mark C. Walters, M.D. Access the on-demand CME here.

Sickle Cell Disease Booth in a Box Available for Your Next Community Event
Sickle Cell Disease Booth in a Box is a free toolkit that includes an array of patient-centered educational resources and giveaways to educate people about hematopoietic cell transplantation for SCD. It can be used at community health fairs, conferences and other events. Reserve your booth in a box today. Questions about Booth in a Box? Contact Lensa Idossa: lidossa@nmdp.org.

The Sickle Cell Disease Community Gets Connected

Get Connected

The Sickle Cell Disease Association of America, Inc. (SCDAA) established the first and only national patient-powered registry, Get Connected. The registry enables individuals living with sickle cell disease (SCD) and sickle cell trait (SCT) to enter their medical histories online in the secure Get Connected database and to receive information about current treatments, research studies, and advocacy initiatives. With 4,400 adults and children with SCD in the registry, Get Connected helps patients better navigate the healthcare system, improves access to disease-specific healthcare, and is a platform for research initiatives generated by the needs of the SCD patient population

Get Connected is for children and adults with SCD/SCT and their families, healthcare providers, clinical researchers, advocacy organizations, and SCDAA. The registry distributes high quality information to these groups through newsletters and forums, and it also connects patients to resources on healthcare, behavioral health, and clinical research.

A national patient registry helps patients stay up-to-date on the sickle cell community and maintain their medical histories. It strengthens the community and unifies its efforts to build better healthcare solutions for patients across the country. SCDAA can glean aggregate level data from patient entries to learn how many individuals currently living with SCD reside in the United States. The data demonstrates the need for funding support for research and treatment, getting us closer to finding a universal cure.

Get Connected is free, confidential and HIPAA approved. For more information, click here.

AABB Launches Survey in Response to RAND Study

In 2016, RAND published a study on blood sustainability that was commissioned by HHS’s Advisory Committee on Blood and Tissue Safety and Availability (ACBTSA). The findings of this report were widely disputed at a 2016 ACBTSA meeting. AABB and other stakeholders are developing advocacy and engagement plans aimed at the sustainability of the blood supply to ensure that the sector retains the ability to innovate, prepare for and respond to shortages, emergencies and disasters. AABB’s Pediatrics Subsection recently launched a comprehensive survey on pediatric and neonatal transfusion practices. Please contact Dr. Barbee Whitaker at bwhitaker@aabb.org for additional information.

SCD Congressional Briefing to Be Held June 7

Throughout the past century, great advancements have been made in the understanding and treatment of sickle cell disease (SCD).This chronic disease has one proven cure: bone marrow transplantation. Innovative therapies, such as gene editing, may show promise for a cure in the future, with research underway to determine efficacy.

On June 7, the American Society of Hematology, the Sickle Cell Disease Association of America, the National Marrow Donor Program/Be The Match, and the American Society of Gene and Cell Therapy, are hosting a Congressional briefing to spread the word about the advancements in SCD research. Speakers include SCD experts, Linda Burns, M.D., and Dan Bauer, M.D., Ph.D. Constance Benson, a transplant recipient, will also join the panel to share her experience of struggling with SCD and choosing transplant as a cure. RSVP here.

The CDC Creates New Infographic on the Basics of Sickle Cell Disease

Wondering how you can help increase knowledge about sickle cell disease (SCD)? Share the Centers for Disease Control and Prevention’s new infographic, “5 Facts You Should Know About Sickle Cell Disease.” This compelling visual conveys clear information in one place on a variety of SCD topics, including:

  • Inheritance
  • Bone marrow transplants
  • Blood transfusions

This educational tool ends with useful tips for people with SCD about how to lower their chance of developing health problems related to their condition. Help spread useful information about SCD by sharing the infographic and corresponding buttons on your website, blog, or social media channels, such as Facebook, Twitter, and Instagram. These materials are also available in English, Spanish, and French. Access these here.

11th Annual Sickle Cell Disease and Thalassemia Conference

The 2017 Annual Scientific Conference on Sickle Cell and Thalassaemia is a three-day conference aimed at all those with a common interest in sickle cell disease and thalassemia. It will be held in London on October 11-13. The conference serves as an opportunity to learn about the latest advances in clinical care, as well as transition services and emerging new therapies, including updates for curative treatment options. This year’s theme is ‘patient choice in a changing landscape of treatment and cure for sickle cell and thalassemia.’ There will also be sessions on genetics and genomic progress, curative therapies and emerging services, as well as abstract and poster presentations. For more information and to register, click here.

SCDAA Announces National Abstract Competition for 45th Annual Convention

The Sickle Cell Disease Association of America, Inc. (SCDAA) seeks to highlight the work of Researchers, Community-based Member Organizations, Physicians, Nurses, Social Workers and others working on behalf of people with sickle cell disease and their families. Individuals or organizations interested in presenting reports on work completed or in progress should submit an abstract using the link below. All approved abstracts will be published in the final program to be distributed to registered conference attendees. During peer-review, abstracts judged to be the best in their categories will be selected as national finalists. Abstract Categories Include:

  • Community Based Research
  • Clinical Research
  • Public Health, Policy, and Psychosocial Research
  • Basic Science and Translational Research

To be eligible, abstracts must meet guidelines and be submitted by June 15, 2017 (there will be no deadline extensions). Abstracts will be reviewed and ranked by the national abstract review committee. Abstract finalists will be judged during oral presentation and the "Best Abstract" in each category will be announced at the conclusion of the 45th Annual National SCDAA Convention. Special awards for the best student and trainee abstracts will also be given. We look forward to seeing you in October!

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Submit your abstract today!

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The SCDC Update, the coalition newsletter, will be issued at least six times per year with the aim of bolstering collaboration and information-sharing SCDC members and the SCD community at-large.