ASH Sickle Cell Disease Initiative
- Read our response to New York Times investigation on sickle cell trait being cited in police custody deaths.
- View ASH's updated position statement on Sickle Cell Trait.
- Watch our video on Gene Therapy and Sickle Cell Disease, created in partnership with the American Society of Gene & Cell Therapy and the ASH Research Collaborative.
- View ASH's list of COVID-19 resources for hematologists, including the sickle cell disease ED checklist and frequently asked questions about SCD and COVID-19.
- Download guidelines related to SCD, including the latest SCD Guidelines on the Management of Acute and Chronic Pain.
- View our SCD resource, a collection of pain management resources from vested stakeholders.
- Learn more about The ASH Research Collaborative (ASH RC) SCD Clinical Trials Network.
- View the latest livestream conversations held in conjunction with World Sickle Cell Awareness Day.
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.
Explore ASH’s SCD priorities outlined below and discover the steps ASH has taken, and continues to explore to make a significant difference in SCD access to care, research, and global issues.
Founded by ASH in 2016 to help amplify the voice of the SCD stakeholder community to improve outcomes for individuals with SCD
An overview of ASH activities to advance sickle cell disease and sickle cell trait research
ASH works with federal agencies and the U.S. Congress to help enhance and expand government activities in SCD research, training, and services
Expanding screening, care, and awareness for SCD worldwide
Resources designed to increase understanding of sickle cell trait
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 85 groups includes 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 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.
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. The foundation of the ASH RC is its Data Hub, a technology platform that facilitates the exchange of information by aggregating in one place, and making available for inquiry, research-grade data on hematologic diseases.
The first research initiative of ASH RC was a Sickle Cell Disease (SCD) Clinical Trials Network (CTN), which launched in 2019 to optimize the conduct of clinical trials research in SCD. The Network leverages the Data Hub to collect key information and identify gaps that will help advance SCD research and treatment.
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.
Celebrating World Sickle Cell Awareness Day
Leading experts in sickle cell disease (SCD) participated in a live social media discussion on June 17, 2021, to celebrate recent progress in SCD and commemorate World Sickle Cell Awareness Day.
Clinical Research and Sickle Cell Disease
This important discussion explores issues in sickle cell disease (SCD) clinical research from the participant's perspective.
Other SCD Research-Focused Resources
- FDA-ASH SCD Endpoints Workshop
- SCD articles in Blood, the official journal of ASH
- ASH Agenda for Hematology Research
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 is also working closely with the Emergency Department Sickle Cell Care Coalition to support their efforts to improve emergency care of individuals with SCD.
ASH is in the process of publishing and implementing five new clinical practice guidelines on the management of acute and chronic complications of SCD. Available guidelines include: Cardiopulmonary and Kidney Disease; Transfusion Support; and Cerebrovascular Disease. The guideline on Management of Acute and Chronic Pain will be released on June 19 and the guideline on Transplantation will be released later this year..
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.
- 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.
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. ASH’s advocacy efforts are also focused on improving quality of care for individuals with SCD and improving reimbursement for care provided.
ASH is focused on raising awareness of SCD globally by partnering with global organizations to build SCD-focused education. ASH is currently exploring the development of a consortium of African countries to address newborn screening for SCD. The consortium would introduce standard-of-care practices for screening and early intervention therapies at participating institutions, with the goal of decreasing childhood mortality rates for SCD.
The State of Sickle Cell Disease
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 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