ASH Center for Sickle Cell Disease Initiatives
The American Society of Hematology (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.
SCD Research Priorities
Gene Therapy and SCD
ASH Research Collaborative
SCD Coalition
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)
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)
- Sickle Cell Community Resources
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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