ASH Center for Sickle Cell Disease Initiatives

The 91��Ʒ (ASH) is approaching the 10-year anniversary of its commitment to improving outcomes for individuals living with sickle cell disease (SCD) in the US and worldwide. Since 2015, ASH has served as a convener and a catalyst working alongside multidisciplinary stakeholders to advance access to care, prioritize high-impact research, and support global coordinated action in sickle cell disease. The ASH Center for Sickle Cell Disease Initiatives was recently launched to further ASH’s organization-wide commitment to advancing progress in SCD care and research and align ASH programs for maximum efficiency and impact. Serving as a coordination hub within the organization, the Center will ensure ASH continues to advance sustainable improvement in the lives of people affected by sickle cell disease.

One Journey of Innovation: A Sickle Cell Timeline

The new interactive timeline provides a comprehensive resource on the history of sickle cell disease (SCD), from discovery over 100 years ago to the treatment landscape of today. Explore the major milestones and figures from the fight to conquer SCD, including how ASH's own contributions to SCD research and treatment.

VIEW the scd TIMELINE

Gene Therapy and SCD

ASH recently sent a letter to the Centers for Medicare & Medicaid Innovation Center (CMMI) outlining important items for CMMI to consider in the development of the Cell & Gene Therapy Access Model (CGT Access Model) for Sickle Cell Disease (SCD). The letter outlines a comprehensive “wishlist” for treatment considerations that are crucial to this model.

Read the Letter

The 91��Ʒ Collaborative (ASH RC) was established by the 91��Ʒ (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).

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.

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.

SCD Adult Care Centers Workshop
(This point-of-care tool was developed in partnership with ACEP)
(This video was created in partnership with the American Society of Gene & Cell Therapy and the 91��Ʒ Collaborative)

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)
(This toolkit was developed in partnership with CDC)

SCD INITIATIVE ACTIONS

Consortium on Newborn Screening in Africa (CONSA)

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) seeks to demonstrate the benefits of newborn screening and early interventions for children with SCD in sub-Saharan Africa.

Learn More

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.

Learn More

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.

Learn More

QUESTIONS?

To learn more about the Sickle Cell Disease Initiative, please contact Sickle Cell Disease Programs Manager Ramona Spencer at [email protected].

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