Next year marks the 10-year anniversary of ASH’s commitment to improving outcomes for individuals living with sickle cell disease (SCD), with a focus on enhancing access to quality care, prioritizing high-impact research, and supporting coordinated global action. To build on the progress toward achieving critical and lasting results, the Society recently launched the ASH Center for Sickle Cell Disease Initiatives, as well as developed an updated list of research priorities intended to serve as a critical guide for those working to improve health outcomes and curative options.
The efforts are intended to “move the field forward,” according to 2024 ASH President Mohandas Narla, DSc, distinguished scientist at New York Blood Center Enterprises.
The new center is designed to optimize the efficiency and impact of ASH programs, bringing greater focus and cohesion to advancing the Society’s SCD initiatives. The center’s staff will also oversee and administer the SCD Coalition — a group of more than 120 public health, research, and provider organizations; patient groups; industry; and funding organizations — which seeks to amplify the voice of the SCD stakeholder community and promote greater awareness.
ASH’s recently updated SCD Research Priorities provide a roadmap for advancing SCD research, training health care providers, and improving standards of care over the next five years. The priorities highlight seven key areas on which the SCD stakeholder community should focus their efforts to achieve maximum impact and patient benefit:
- Conduct studies on the assessment, prevention, and treatment of end-organ dysfunction.
- Enhance pain research.
- Optimize use of hydroxyurea, blood transfusions, and currently approved pharmacologic therapies.
- Develop novel drug therapies.
- Strengthen curative therapies.
- Conduct studies on the impact of the dissemination and implementation of evidence-based guidelines for SCD.
- Expand sickle cell trait research.
The new research priorities were developed in collaboration with a wide range of researchers and health care providers, with an emphasis on the current realities, challenges, and aspirations of SCD research. The priorities highlight unaddressed questions in the SCD research space, the answers to which would accelerate progress in basic, translational, and clinical research, improving the lives of individuals living with the disease.
“Despite significant advancements, current treatments and care models fall short in addressing the complex challenges faced by individuals with SCD, particularly in marginalized communities,” said Dr. Narla. “Our new research priorities aim to be a guide for future research and comprehensive care, ensuring better access and equity for all patients. It’s imperative that we continue to move the field forward to deliver more progress for people living with SCD.”
These new research priorities update ASH’s 2014 priorities and can be viewed at hematology.org/SCD.
Annual meeting attendees can learn more about ASH’s SCD programs and priorities at a SCD reception Monday evening. Details are available on the online program.
