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.
Listen to ASH's latest podcast series, Bringing Sickle Cell Disease to Life, and join ASH in the fight for Sickle Cell Disease survival, where you'll hear from leading experts, including researchers, physicians, and individuals living with the disease, exploring its past, present, and future.
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.
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.
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
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 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.
SCD Policy Priorites
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.
SICKLE CELL TRAIT
- 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
To learn more about the Sickle Cell Disease Initiative, please contact Sickle Cell Disease Programs Manager Ramona Spencer at [email protected].