ASH Sickle Cell Disease Initiative

The American Society of Hematology (ASH) is undertaking a multifaceted initiative to address the burden of sickle cell disease (SCD), both in the United States and globally. Throughout the initiative, ASH has engaged a broad array of stakeholders to identify the highest priorities needed to improve outcomes for individuals with SCD.

Explore ASH’s SCD priorities outlined below, and discover the steps ASH has taken and continues to explore to make a significant difference in SCD access to care, research, and global issues.

Sickle Cell Disease Coalition

In 2016, the Sickle Cell Disease Coalition (SCDC) was founded to help amplify the voice of the SCD stakeholder community, promote awareness, and improve outcomes for individuals with SCD.

The SCDC’s growing membership of more than 50 groups includes public health, research, and provider organizations; patient groups; federal agencies; industry representatives; and foundations. The SCDC is focused on coordinating efforts to produce the greatest impact for individuals with SCD.

SCD Research Priorities

ASH is committed to advancing SCD and sickle cell trait research and has developed a list of ASH Priorities for Sickle Cell Disease and Sickle Cell Trait, which includes ASH’s Sickle Cell Research Priorities.

ASH continues to take steps to advance SCD research and is currently exploring opportunities to enhance SCD clinical research to:

• Improve outcomes for individuals with SCD
• Facilitate innovative approaches to clinical trials research
• Expedite drug development

ASH Research Collaborative

The ASH Research Collaborative (ASH RC) was established by the American Society of Hematology (ASH) in 2018 to foster collaborative partnerships to accelerate progress in hematology, with the goal of improving the lives of people affected by blood diseases. The foundation of the ASH RC is its Data Hub, a technology platform that facilitates the exchange of information by aggregating in one place, and making available for inquiry, research-grade data on hematologic diseases.

The first research initiative of ASH RC is a Sickle Cell Disease (SCD) Clinical Trials Network (CTN), which will launch in 2019 to optimize the conduct of clinical trials research in SCD. The Network will leverage the Data Hub to collect key information and identify gaps that will help advance SCD research and treatment.

Other SCD Research-Focused Resources

• SCD articles in Blood, the official journal of ASH
• ASH Agenda for Hematology Research

ASH Research Collaborative SCD Clinical Trials Network

The ASH Research Collaborative (ASH RC) SCD Clinical Trials Network is being launched with a mission of improving outcomes for individuals with SCD by expediting SCD therapy development and facilitating innovation in clinical trial research. To apply to become a Network site, submit a letter of intent by January 31, 2019 to SCD-CTN@ashresearchcollaborative.org.

SCD Access to Care

ASH is committed to ensuring that individuals with SCD have access to high quality of care and is currently in the process of developing and implementing a multi-pronged strategy to expand health care professional education and training on SCD. Activities are aimed at four key audiences: hematologists, patients, hospitalists, and primary care clinicians. The Society is also working closely with the Emergency Department Sickle Cell Care Coalition to support their efforts to improve emergency care of individuals with SCD.

ASH is also developing and implementing five new clinical practice guidelines on the management of acute and chronic complications of SCD. Publication of the guidelines is anticipated in 2019.

The following resources were developed by ASH for those working to improve outcomes for persons with SCD.

• Resources for Clinicians: From developing pocket guides and clinical guidelines to producing SCD-related webinars, ASH is committed to helping those who treat SCD patients provide quality care, continue their professional development, and enhance their knowledge and expertise.
  
  • Benign Hematology Curriculum
• Resources for Patients: An overview of sickle cell disease for patients, including an explanation of the difference between sickle cell trait and sickle cell anemia.
  • Informational booklet on hydroxyurea.

SCD Policy Priorities

ASH works with federal agencies and the U.S. Congress to help enhance and expand government activities in SCD research, training, and services. ASH is working with congressional champions to raise awareness for SCD on Capitol Hill, to have legislation introduced to strengthen current federal SCD programs, and to increase funding for federal SCD programs. ASH also continues to encourage the Centers for Medicare & Medicaid Services (CMS) to test innovative payment models for SCD care delivered by health care professionals.

View SCD policy news

SCD-focused advocacy information and tools:

• ASH Advocacy Toolkit
• Fact Sheet on Expanding SCD Efforts at CDC
• Talking Points for Expanding SCD Efforts at CDC
• 2017 Congressional Briefing on SCD Research and Treatment Advances

Global Issues

ASH is focused on raising awareness of SCD globally by partnering with global organizations to build SCD-focused education. ASH is currently exploring the development of a consortium of African countries to address newborn screening for SCD. The consortium would introduce standard-of-care practices for screening and early intervention therapies at participating institutions, with the goal of decreasing childhood mortality rates for SCD.

The State of Sickle Cell Disease

This short documentary about sickle cell disease, set in sub-Saharan Africa, addresses the need for newborn screening and counters the prevailing myths about SCD.

Sickle Cell Trait Resources

• Sickle Cell Trait Toolkit, created together with the Centers for Disease Control and Prevention (CDC) and the Sickle Cell Disease Association of America (SCDAA), to increase understanding of sickle cell trait
• ASH Statement on Screening for Sickle Cell Trait and Athletic Participation

Questions?

If you are interested in learning more about the Sickle Cell Disease Initiative, please contact Sickle Cell Disease Programs Manager Shantá Robertson at srobertson@hematology.org.