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American Society of Hematology to Launch Sickle Cell Disease Clinical Trials Network

(WASHINGTON, September 12, 2018) — The American Society of Hematology (ASH) is launching a sickle cell disease (SCD) clinical trials network in order to accelerate the development of new therapies for a patient community that has very few treatments and curative options.

The core activities of the network will include matching clinical trial sponsors with research sites, facilitating patient recruitment, and improving the efficiency of clinical trials by advising on optimal trial design and ensuring a coordinated approach across the network. The first study is expected to be initiated in the fall of 2019.

The network will be led by Charles “Chuck” Chesson, PhD, who was named as director in July of 2018. Dr. Chesson comes to ASH after nearly two decades at the public health research organization Social and Scientific Systems, where he most recently served as Group Vice President, Clinical Research and Bioscience.

"We are on the brink of a new era in SCD research and treatment. Interest in this disease is expanding, with more than 40 treatments and more than a dozen devices in the research and development pipeline,” said ASH President Alexis Thompson, MD, MPH, of the Ann & Robert H. Lurie Children’s Hospital of Chicago. “However, enrollment and completion of clinical trials in SCD have historically been slow and costly. Establishing an organized network that will accelerate the completion of clinical research studies and bring new therapeutic options to patients more quickly is one of the most meaningful ways ASH can make a difference in the lives of people with this debilitating, chronic disease.”

The clinical trials network aims to address the inefficiencies and redundancies of the current research landscape by centralizing administrative functions and facilitating data sharing. For example, a single institutional review board (IRB) will serve all research sites and trial sponsors, and at the core of the network will be a centralized data repository developed and maintained by ASH. The clinical trials network will also provide consulting services for all sites, which will include sharing best practices and advising on the research opportunities that hold the most promise for people with SCD.

A robust patient engagement plan will be integral to the success of the clinical trials network. To that end, people with SCD will be involved early and in a meaningful way to improve trial design, enrollment, and execution of the trials within the network. Individuals living with SCD will serve on various committees, with the hope of encouraging strong relationships between the SCD community and the clinical research sites.

“In the past, the voice of individuals living with SCD has been largely absent in decisions about clinical trials, which has led to failures of patient engagement and participation,” said Dr. Thompson. “One fundamental aspect of the ASH clinical trials network is designed to give them a seat at the table where they will be valuable partners.” 

SCD is an inherited, chronic disorder affecting nearly 100,000 Americans. Individuals with the disease produce abnormal hemoglobin, a protein in red blood cells that attaches to oxygen in the lungs and carries it to all parts of the body. This abnormal hemoglobin causes the red blood cells to become rigid and sickle-shaped, which causes them to stick together and block the flow of blood and oxygen to the body, leading to intense pain and other serious issues such as stroke, infection, pulmonary complications, and even death.

Although scientists have known the cause of SCD for many years, far too few treatments have been developed, and many people lack access to treatments that could improve the duration and quality of their lives. In 2016, ASH united with stakeholders in the SCD community to launch a call to action to accelerate progress in both research and access to appropriate care in the United States and in developing countries where SCD is endemic. The clinical trials network is just one program ASH has launched as part of its multi-faceted commitment to conquering SCD. For more information about all of ASH’s SCD activities, visit www.hematology.org/SCD.

The American Society of Hematology ( www.hematology.org) is the world’s largest professional society of hematologists dedicated to furthering the understanding, diagnosis, treatment, and prevention of disorders affecting the blood. For more than 50 years, the Society has led the development of hematology as a discipline by promoting research, patient care, education, training, and advocacy in hematology. ASH publishes Blood ( www.bloodjournal.org), the most cited peer-reviewed publication in the field, which is available weekly in print and online. In 2016, ASH launched Blood Advances ( www.bloodadvances.org), an online, peer-reviewed open-access journal. 

Amanda Szabo, American Society of Hematology
[email protected]; 202-552-4914