ASH Sickle Cell Disease Initiative

The American Society of Hematology (ASH) has launched a transformative, multi-faceted, patient-centric initiative to improve outcomes for individuals with the disease, both in the United States and globally, by bringing together stakeholders in the public and private sectors committed to significantly improving the state of SCD worldwide.

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 85 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 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 was a Sickle Cell Disease (SCD) Clinical Trials Network (CTN), which launched in 2019 to optimize the conduct of clinical trials research in SCD. The Network leverages the Data Hub to collect key information and identify gaps that will help advance SCD research and treatment.

Other SCD Research-Focused Resources

• FDA-ASH SCD Endpoints Workshop
• SCD articles in Blood, the official journal of ASH
• ASH Agenda for Hematology Research

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 in the process of publishing and implementing five new clinical practice guidelines on the management of acute and chronic complications of SCD. Available guidelines include: Cardiopulmonary and Kidney Disease; Transfusion Support; and Cerebrovascular Disease. The guideline on Management of Acute and Chronic Pain will be released on June 19 and the guideline on Transplantation will be released later this year..

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
  • SCD Adult Care Centers Workshop
• 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 raise SCD awareness as well as help enhance and expand government activities in SCD research, training, and services. ASH’s advocacy efforts are also focused on improving quality of care for individuals with SCD and improving reimbursement for care provided.

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.