ASH Sickle Cell Disease Initiative

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 100 groups include 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.

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.  ASH RC developed a centralized SCD clinical data platform, called the Data Hub, and a SCD Clinical Trials Network (SCD CTN).

The SCD Data Hub was launched in 2020 to support SCD research and enhance care. The Data Hub is curating SCD data in a wide variety of formats from multiple sources including but not limited to electronic medical records, clinical and laboratory data, and genomic data.

The SCD CTN is designed to expedite the development of novel SCD therapeutics, facilitate collaboration and innovation in research, and enhance the care of those living with SCD. The CTN leverages an infrastructure network of highly vetted clinical trial sites and clinician scientists, the Data Hub registry, and scientific and community advisory boards. Foundational to the SCD CTN is engagement with the SCD community to ensure that efforts are informed by the needs and desires of those living with SCD and their caregivers at both local and national levels.

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 has worked closely with the Emergency Department Sickle Cell Care Coalition to support their efforts to improve emergency care of individuals with SCD.

ASH published five new evidence-based clinical practice guidelines on the management of acute and chronic complications of SCD. Available guidelines include: Cardiopulmonary and Kidney Disease; Cerebrovascular Disease; Management of Acute and Chronic Pain; Stem Cell Transplantation; and Transfusion Support.  

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
  • Managing Sickle Cell Disease in the ED (This point-of-care tool was developed in partnership with ACEP)
  • Health Equity and SCD Public Service Announcement
  • Gene Therapy and Sickle Cell Disease (This video was created in partnership with the American Society of Gene & Cell Therapy and the ASH Research Collaborative)
  • COVID-19 Resources for Hematologists, including the sickle cell disease ED checklist and frequently asked questions about SCD and COVID-19
• 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 (English) (Spanish)
  • Steps to Better Health for People with Sickle Cell Disease Toolkit (This toolkit was developed in partnership with CDC)

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. The Society’s SCD programs align with national strategies outlined in the recent National Academies of Sciences, Engineering, and Medicine Report on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, and will be further enhanced to address identified barriers in the healthcare sector associated with SCD treatment and support.

Global Issues

ASH is focused on raising awareness of SCD globally by partnering with global organizations to build SCD-focused education.   The Society founded the Consortium on Newborn Screening in Africa (CONSA) – an international network that seeks to demonstrate the benefits of newborn screening and early interventions for children with SCD in sub-Saharan Africa. CONSA sites in Ghana, Kenya, Liberia, Nigeria, Tanzania, Uganda, and Zambia have begun screening newborn babies for SCD and are providing care for those who test positive.

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.

World Sickle Cell Awareness Day

To commemorate World Sickle Cell Awareness Day, a United Nations-designated day to spread awareness about sickle cell disease as a public health priority, ASH and ASH Research Collaborative held two special social media livestream conversations.

The State of Sickle Cell Disease

Download the report.

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
• ASH's response to the New York Times investigation on sickle cell trait being cited in police custody deaths
• View ASH's updated position statement on Sickle Cell Trait

Questions?

If you are interested in learning more about the Sickle Cell Disease Initiative, please contact Sickle Cell Disease Programs Manager Shantá Robertson at [email protected].