Sickle Cell Disease Research Network
Facilitating Sickle Cell Disease Research to Improve Clinical Outcomes
Sickle Cell Disease Research Network
The ASH Research Collaborative® (ASH RC) Sickle Cell Disease Research Network (SCD Network) was launched with the mission of fostering collaborative partnerships to accelerate progress in research and improve outcomes for individuals with sickle cell disease (SCD) by advancing SCD therapeutics and generating new evidence that improves our understanding of SCD and supports clinical decisions and care.
The SCD Network and its partners share a commitment to:
- Build relationships with the SCD Community, those living with and caring for someone with SCD, to increase their understanding of clinical trials and trust in SCD research.
- Design and execute high-quality multi-center research that addresses key questions and gaps in SCD care.
- Leverage the power of real-world evidence through a centralized data repository — the ASH RC Data Hub.
- Collaborate with industry sponsors to design more effective and efficient clinical trials.
- Focus on research opportunities that hold the most promise for individuals living with SCD.
The ASH RC Sickle Cell Disease Research Network Sites
The SCD Research Network consists of sites throughout the United States that represent hundreds of specialized SCD physicians, nurses, and clinical investigators who share a commitment to clinical research.
The SCD Research Network is focused on the most pressing challenges in SCD today. To achieve meaningful progress, the Network is focused on four key areas:
- Partnering with industry to advise on study design, connecting them to the right sites, and enrolling patients in their studies.
- Enabling the generation of high-quality evidence through investigator-initiated research.
- Engaging and mobilizing local patient communities.
- Participating in the Data Hub by supplying real-world, electronic health record data and using that data to generate real-world evidence.
The Network is governed by 20 sites that represent a Network Council which acts as the steering committee – accelerating research and setting the Network’s priorities and strategic direction. The ASH RC provides annual research infrastructure grants to these Network Council sites to ensure they can address all four key areas above.
Beyond the Network Council, there are dozens of additional sites that contribute to the Network’s four priority areas in various ways. All sites participate (or are working towards participating) in the Data Hub program. Engagement with the community has been foundational to the development of the SCD Research Network. The ASH RC provides support for SCD Community Advisory Boards to ensure that Network efforts are informed by the needs and desires of those living with and caring for those with sickle cell disease at both local and national levels.
The following research sites are part of the SCD Network:
Sickle Cell Disease Research Network Sites
Atlanta Clinical Trials Consortium
- Emory University School of Medicine
- Children’s Healthcare of Atlanta
Central Carolina Clinical Trials Consortium
- Duke University Medical Center
- UNC Medical Center
- Wake Forest Baptist Health
Chicagoland Regional Research in Sickle Cell Partnership (CRiSP)
- Ann and Robert H. Lurie Children’s Hospital of Chicago
- Innovative Hematology, Inc.
- OSF Healthcare Children’s Hospital of Illinois
- University of Illinois at Chicago
- University of Chicago
- University Hospital
- LaRabida Children’s Hospital
- Comer Children’s Hospital
Cincinnati and Allied Comprehensive Sickle Cell Centers (CACSCC)
- Cincinnati Children’s Hospital Medical Center
- Akron Children’s Hospital
- Louisville/Norton Children’s Hospital
- University of Cincinnati Health
Connecticut and Rhode Island SCD Consortium
- University of Connecticut Health
- Connecticut Children’s Medical Center
- Rhode Island Lifespan Academic Medical Center
- Yale New Haven Hospital
DMV Sickle Cell Disease Consortium (DMVSCDC)
- Children’s National Health System
- Howard University Hospital (Pediatrics)
- Inova Schar Cancer Institute Adult Sickle Program, Fairfax Hospital
- Kaiser Permanente Mid Atlantic Permanente Medical Group and Research
- Medstar Washington Hospital Center
- Pediatric Specialists of Virginia (Inova)
- Virginia Commonwealth University
Heartland Southwest SCD Consortium
- Washington University School of Medicine
- 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
Houston Clinical Trials Consortium
- Baylor College of Medicine/Texas Children’s Hospital
- Methodist Hospital (Houston)
- Texas Children’s Hospital Main Center
- Texas Children’s Hospital (West Campus)
- Texas Children’s Hospital (Woodlands Campus)
- University of Texas Health Science Center at Houston
Massachusetts SCD Clinical Trials Consortium (MASCOT)
- Boston Medical Center
- Boston Children’s Hospital
- Brigham and Women’s Hospital
New Jersey Sickle Cell Clinical Trials Consortium
- Newark Beth Israel Medical Center/Children’s Hospital of New Jersey
- Hackensack University Medical Center
- Rutgers Cancer Institute of New Jersey
- St Joseph’s Children’s Hospital
- Saint Peter’s University Hospital
- University Hospital (Rutgers)
NYC Health + Hospitals Consortium
- NYC Health & Hospitals/Jacobi Medical Center
- NYC Health & Hospitals/Harlem Hospital
- NYC Health & Hospitals/Kings County Hospital
- NYC Health & Hospitals/Lincoln Hospital
- NYC Health & Hospitals/North Central Bronx Hospital
- NYC Health & Hospitals/Queens Hospital
New York Sickle Cell Clinical Trials Consortium
- Montefiore Medical Center
- Brookdale Hospital Medical Center
- Cohen Children’s Medical Center
- Columbia University Medical Center
- Interfaith Medical Center
- Methodist Hospital (New York)
- Mount Sinai Hospital
- Weill Cornell Medicine
North Texas Clinical Trials Consortium
- UT Southwestern Medical Center
- Children’s Medical Center Dallas
- Clements University Hospital
- Cook Children’s Health Care System
- Parkland Health and Hospital System
Philadelphia Area Care Team for SCD (PACT 4 SCD)
- Children’s Hospital of Philadelphia
- Hospital of the University of Pennsylvania
- Pennsylvania Hospital
- St. Christopher’s Hospital for Children
Sickle Cell Disease Clinical & Research Consortium of Southeastern Wisconsin
- Medical College of Wisconsin
- Children’s Hospital of Wisconsin
- Froedtert Hospital
Sickle Cell Disease Network of Central Alabama
- University of Alabama at Birmingham
- Children’s of Alabama (COA)/UAB Pediatric Hematology Clinic
- Mississippi Center for Advanced Medicine
- University of Mississippi Medical Center
- UAB Cancer Center at Russell Medical Center
Sickle Mid-Atlantic Research Team (SMART)
- The Johns Hopkins University School of Medicine
- Charleston Area Medical Center
- Christiana Care Health System
- Herman & Walter Samuelson Children’s Hospital at Sinai Hospital
- 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 (SC)2 Network
- Prisma Health Children’s Hospital – Upstate
- Medical University of South Carolina Lifespan Comprehensive SCD Center
- Prisma Health Children’s Hospital – Midlands
Southern Coastal Collaborative
- Augusta University Adult & Pediatric Comprehensive Sickle Cell Program
- Foundation for SCD Research in Hollywood, FL
Western States Sickle Cell Disease Clinical Trials Network (WeSt SCD CTN)
- UCSF Benioff Children’s Hospital of Oakland
- UCSF Helen Diller Medical Center at Parnassus
- UCSF Medical Center at Mission Bay
- UCSF Zuckerberg San Francisco General Hospital
- University of California Davis Medical Center
- University of California Irvine School of Medicine
- University of California, Los Angeles
ASH RESEARCH COLLABORATIVE
The ASH Research Collaborative (ASH RC) is a non-profit organization established by the American Society of Hematology (ASH) in 2017 to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology. Learn more about ASH RC