(WASHINGTON, Aug. 16, 2021) – The ASH Research Collaborative (ASH RC) has announced the first 10 clinical research consortia to join the ASH RC Sickle Cell Disease Clinical Trials Network. The sites will be able to enroll children and adults living with sickle cell disease (SCD) within their patient populations in clinical trials as part of an unprecedented national effort to streamline operations and facilitate data sharing to expedite the development of new treatments for this disease.

SCD is a chronic, progressive, life-threatening, inherited blood disorder that affects more than 100,000 Americans and an estimated 100 million persons worldwide. Clinical trials hold incredible promise for the development of much-needed new treatments, and possibly even a cure. While there are currently only four U.S. Food and Drug Administration (FDA)-approved drugs to treat the disease, there is a robust SCD drug development pipeline that will drive demand for clinical trials to a new level, providing a prime opportunity to advance treatment and care of those affected by SCD.

The SCD Clinical Trials Network is poised to accelerate progress by bringing together a community of research-ready clinical sites and experienced investigators, connecting industry sponsors to sites and the community, leveraging real-world data to support clinical trials through the ASH RC Data Hub, and facilitating efficient, coordinated clinical trial startup. Engagement with the community has been foundational to the development of the SCD Clinical Trials Network. The ASH RC provides support for SCD Community Advisory Boards at each consortium to ensure that Network efforts are informed by the needs and desires of those living with and caring for those with SCD at both local and national levels.

“We’re entering a new era for how clinical trials are designed and conducted, and the ASH Research Collaborative SCD Clinical Trials Network is committed to ensuring that the voice of the SCD community is heard at every stage of the process while ensuring a coordinated, efficient approach. We hope to accelerate our ability to bring new treatments to individuals who are living with this difficult disease,” said Martin S. Tallman, MD, of Memorial Sloan Kettering Cancer Center, who serves as president of the ASH Research Collaborative, and the American Society of Hematology.

Each consortium in the Network consists of a clinical trials unit (CTU) that serves as the lead clinical trial site, or hub, providing administrative expertise and infrastructure to support various clinical research sites (CRS), or spokes, within each consortium (see full list below). A CRS can be a hospital, outpatient clinic, community health center, private practice, or local health department clinic. Approximately 24,000 children and adults living with sickle cell disease are currently represented by the Network.

“The ASH RC Sickle Cell Disease Clinical Trials Network is uniquely situated to accelerate clinical research and the development of novel therapeutics to help those living with sickle cell disease,” said Charles S. Abrams, MD, Chair of the ASH RC SCD Clinical Trials Network Oversight Committee. “This an unprecedented opportunity to make a profound difference in the lives of people with sickle cell disease. We are committed to partnering with patients, families, and the broader sickle cell disease community.”

Inclusiveness, commitment to rigorous standards, and improving the access of the SCD community to clinical trials are guiding principles of the SCD Clinical Trials Network. In addition to the ten consortia that have already been activated, additional network sites are in the onboarding process. Additions to the SCD Network will continue to be announced on a rolling basis.

The ASH RC Sickle Cell Disease Clinical Trials Network Sites:

Central Carolinas Clinical Trials Collaboration
Clinical Trials Unit: Duke University Medical Center (Adult & Pediatrics)
Clinical Research Sites: UNC Medical Center (Adult & Pediatrics; Wake Forest Baptist Health (Adult & Pediatrics) 

Chicagoland Regional Research in Sickle Cell Partnership (CRiSP)
Clinical Trials Unit: Ann & Robert H. Lurie Children’s Hospital of Chicago
Clinical Research Sites: Indiana Hemostasis and Thrombosis Center; Northwestern Memorial Hospital; OSF Healthcare Children’s Hospital of Illinois; University of Illinois at Chicago; University of Chicago (University Hospital; Comer Children’s Hospital; LaRabida Children’s Hospital) 

DMV Sickle Cell Disease Consortium (DMVSCDC)
Clinical Trials Unit: Children’s National Health System
Clinical Research Sites: Howard University; Kaiser Permanente Mid-Atlantic Permanente Medical Group (MAPMG) and Mid-Atlantic Permanente Research Institute (MAPRI); MedStar Washington Hospital Center; Pediatric Specialists of Virginia; Virginia Commonwealth University/Children’s Hospital of Richmond 

The Heartland/Southwest SCD Consortium
Clinical Trials Unit: Washington University School of Medicine
Clinical Research Sites: Children’s Mercy of Kansas City; University of Arkansas for Medical Sciences; University of Iowa Medical Center; University of Missouri Health Center; University of Oklahoma Health Sciences Center 

New York Sickle Cell CTN Consortium
Clinical Trials Unit: Montefiore Medical Center
Clinical Research Sites: Brookdale Hospital Medical Center; Columbia University Medical Center; Cohen Children’s Medical Center; Cornell Medical Center; Interfaith Medical Center; Methodist Hospital; Mount Sinai Hospital 

North Texas Clinical Trials Consortium
Clinical Trials Unit: UT Southwestern Medical Center
Clinical Research Sites: Children’s Medical Center Dallas; Clements University Hospital; Cook Children’s Health Care System; Medical City Children’s Hospital, Dallas; Parkland Health and Hospital System

SCD Clinical and Research Consortium of Southeastern Wisconsin
Clinical Trials Unit: Medical College of Wisconsin
Clinical Research Sites: Children’s Hospital of Wisconsin; Froedtert Hospital 

Sickle Mid Atlantic Research Team (SMART)
Clinical Trials Unit: The Johns Hopkins University School of Medicine
Clinical Research Sites: Charleston Area Medical Center (CAMC); Christiana Care Health Services; Herman & Walter Samuelson Children’s Hospital at Sinai Hospital; Inova Health System (Fairfax); Johns Hopkins All Children’s Hospital- FL; Nemours / Alfred I DuPont Hospital for Children; Peninsula Regional Medical Center; University of Maryland Medical Center 

South Carolina Sickle Cell Disease Network
Clinical Trials Unit: Prisma Health Children’s Hospital – Upstate
Clinical Research Sites: Medical University of South Carolina Lifespan Comprehensive SCD Center; Prisma Health Children’s Hospital – Midlands

Western States Sickle Cell Disease Clinical Trials Network (WeSt SCD CTN)
Clinical Trials Unit: University of California San Francisco Benioff Children’s Hospital of Oakland 
Clinical Research Sites: UCSF Helen Diller Medical Center at Parnassus; UCSF Zuckerberg San Francisco General Hospital; University of California Davis Medical Center

More Information:

About the ASH Research Collaborative

The ASH Research Collaborative (ASH RC) is a non-profit organization established by the American Society of Hematology (ASH) to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology. The foundation of the ASH RC is its Data Hub and Clinical Trials Network. The Data Hub, a technology platform that facilitates the exchange of information by aggregating and sharing research-grade data on hematologic diseases. The Sickle Cell Disease Clinical Trials Network (CTN) optimizes the conduct of clinical trials research in sickle cell disease (SCD) and leverages the Data Hub to collect key information and identify gaps to advance SCD research and treatment.


Leah Enser, American Society of Hematology