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
Icon Legend:
- Council Site
Research Network Sites
- Ann and Robert H. Lurie Children’s Hospital of Chicago
- Augusta University Adult Comprehensive Sickle Cell Program
- Baylor College of Medicine/Texas Children’s Hospital
- Boston Children’s Hospital
- Boston Medical Center
- Brigham and Women’s Hospital
- Children’s Healthcare of Atlanta
- Children’s Hospital of Philadelphia
- Children’s Hospital of Richmond at VCU
- Children’s Medical Center Dallas
- Children’s National Hospital
- Cincinnati Children’s Hospital Medical Center
- Connecticut Children’s Medical Center
- Duke University Medical Center
- Emory University School of Medicine
- Foundation for Sickle Cell Disease Research
- Hospital of the University of Pennsylvania
- Innovative Hematology
- Inova Schar Cancer Institute Adult Sickle Program, Fairfax Hospital
- Johns Hopkins University School of Medicine
- Levine Cancer Institute
- Medical College of Wisconsin
- Methodist Hospital
- Montefiore Medical Center
Research Network Sites
- Nemours/Alfred I DuPont Hospital for Children
- Newark Beth Israel Medical Center
- NYC Health & Hospitals/Jacobi Medical Center
- Prisma Health Children’s Hospital – Upstate
- Sinai Hospital of Baltimore
- St. Christopher’s Hospital for Children
- St. Jude Children’s Research Hospital, Inc.
- The Center for Sickle Cell Disease at UTHSC
- The University of Chicago
- Thomas Jefferson University
- UCSF Benioff Children’s Hospital of Oakland
- UCSF Helen Diller Medical Center at Parnassus
- UNC Medical Center
- University of Alabama at Birmingham
- University of California Davis Medical Center
- University of California, Los Angeles
- University of Cincinnati Health
- University of Connecticut Health
- University of Illinois at Chicago
- University of Illinois College of Medicine Peoria
- University of Pittsburgh Medical Center / University of Pittsburgh School of Medicine
- UT Southwestern Medical Center
- UTHealth Houston, McGovern Medical School
- Virginia Commonwealth University
- Washington University School of Medicine
Icon Legend:
- Council Site
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