The American Society of Hematology (ASH) has announced the creation of a sickle cell disease (SCD) clinical trials network to accelerate the development of new therapies. The network will match clinical trial sponsors with research sites, facilitate patient recruitment, and provide advice on optimal trial design. Charles “Chuck” Chesson, PhD, will lead the network as its director.
“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. “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 network will address inefficiencies and redundancies by centralizing administrative functions and facilitating data sharing. A single institutional review board will serve all trial sites and sponsors, and a centralized data repository developed and maintained by ASH will be at the core of the network. The network will also provide consulting services for all sites.
Individuals living with SCD will be involved at every step, Dr. Thompson added. “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. [This network] is designed to give them a seat at the table where they will be valuable partners.”
The first study is expected to launch in the fall of 2019.