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    Delaware Sickle Cell Center of Biomedical Research Excellence (DE SCD COBRE)

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    Building a Stronger Future for Children with Sickle Cell Disease 

    Nemours leads the Delaware Comprehensive Sickle Cell Research Center of Biomedical Research Excellence (DE SCD COBRE), a nationally recognized program focused on translational, clinical, and psychosocial research in sickle cell disease. Supported by the National Institutes of Health (NIH) through the IDeA program, this work helps strengthen the research infrastructure, scientific collaboration, and investigator development needed to improve how sickle cell disease is studied and managed.

    This multi-year investment builds on earlier progress by supporting multidisciplinary research that examines the biological, medical, psychological, and societal factors that affect disease severity and response to interventions. It also helps expand the systems and expertise needed to carry out high-quality research and improve care over time.

    The DE SCD COBRE is led by David Brousseau, MD, MS, principal investigator, with Robin E. Miller, MD, and Sylvia Torres, MPH, research program administrator.

    Pediatric Health Impact

    311

    Children receiving care in our sickle cell program.

    67%

    Patients at Nemours enrolled in a clinical research study.

    80%

    Children receiving hydroxyurea (above national averages).

    89%

    Accuracy rate in MRI and transcranial Doppler (TCD) tracking.

    LEARN MORE ABOUT THE PROGRAM

    ON THIS PAGE:

    How the COBRE Strengthens Our Research

    Nemours participates in federally supported research programs designed to build the systems needed for high-quality scientific work. We’ve advanced through multiple phases of the COBRE program, reflecting steady growth in our research capabilities.

    The DE SCD COBRE strengthens the way our teams coordinate studies, manage data, and support investigators across multiple locations. It also enhances the shared research systems used across Nemours, making studies easier to launch and ensuring data is collected in a consistent, reliable way. These improvements support the Nemours Center for Cancer and Blood Disorders by creating stronger systems for studies that guide everyday patient care.

    The program focuses on developing strong cores and giving emerging investigators the environment they need to grow. By improving workflows, data quality, and scientific support, the program reinforces Nemours’ long-term capacity to explore new ideas and serve families through a more unified research approach.

    Through this program, we’re able to:

    • Develop consistent research workflows and scientific support across sites.
    • Strengthen data systems that improve how studies are designed and managed.
    • Support early-career investigators as they establish their research careers.
    • Offer more children access to studies that reflect the latest scientific thinking.

    What We’re Learning About Sickle Cell Disease

    The DE SCD COBRE centers its work on challenges that directly affect children living with sickle cell disease. Teams study how complications develop and how to monitor them earlier. We focus on how to support families through a condition that evolves over time. This helps our researchers identify patterns that shape care, long before symptoms become severe.

    The program also supports projects that explore new approaches to treatment, including disease-modifying therapies and gene-based strategies. Investigators use improved data systems and shared research process to track outcomes. This means we’re better able to understand long-term trends and uncover ways to prevent complications before they start.

    Our work focuses research in areas such as:

    • Early neurological and cerebrovascular changes.
    • Patterns of organ involvement across childhood.
    • Pain, fatigue, and other symptoms affecting daily life.
    • Quality-of-life measures and family experience.
    • Evaluation of disease-modifying and advanced therapies.

    How This Work Improves Care for Children

    The DE SCD COBRE has strengthened the way Nemours delivers care across our sickle cell program. Families receive recommended screenings more consistently, including transcranial Doppler (TCD) ultrasounds — a painless scan that measures blood flow in the brain to identify early stroke risk. Providers also have better tools to track changes in organ health, monitor treatment response, and guide long-term care.

    Participation in clinical studies continues to grow, giving investigators the data needed to refine treatments and understand how sickle cell disease affects children at different ages. These improvements help us intervene earlier and customize treatment plans for better outcomes across childhood and adolescence.

    Examples of measurable progress include:

    • Higher rates of recommended screenings, including TCD ultrasound and ophthalmology.
    • Greater use of disease-modifying therapies compared to national averages.
    • Increased enrollment in research studies across Nemours sites.
    • Stronger readiness for advanced treatments, including gene therapy.

    Collaborating With Leaders in Sickle Cell Research

    Our program is strengthened by collaborations with leaders in sickle cell care, academic research, and national networks. These partnerships expand the expertise available to our investigators and connect Nemours to efforts that shape pediatric sickle cell standards across the country. Each relationship brings a different perspective, resource, or scientific capability that helps us move research forward for children and families.

    We work closely with regional and national partners to link pediatric and adult expertise, participate in multi-site studies, and contribute to national registries and quality-improvement initiatives. These collaborations ensure our work reflects the latest science and gives families access to research innovations happening across the country.

    Key DE SCD COBRE partnerships include:

    Why This Work Matters

    Sickle cell disease shapes many aspects of a child’s daily life. Research provides greater hope for families who often face uncertainty. Programs like the DE SCD COBRE ensure that children can access innovative studies, consistent monitoring, and emerging therapies without needing to leave the communities they trust.

    This program also supports children who historically lacked access to research opportunities. By building a stronger, more connected research environment, we're ensuring that discoveries reach families across Delaware and Florida. It helps us give kids a better chance at long-term health.

    Current Clinical Trials

    Nemours participates in a growing number of clinical trials focused on prevention, early detection, disease modifying therapies, symptom management, and emerging gene-based treatments. These studies help shape the future of sickle cell care and expand the options available to families.

    • Sleep Health Study: Uses actigraphy watches and daily sleep diaries to learn how sleep patterns affect children with sickle cell disease.
    • Jin Eye Study (Optical Coherence Tomography – OCT): Tracks retinal health using annual OCT imaging in children and young adults with sickle cell disease or trait.
    • Jin Eye Study (Fluorescein Angiography – FA): Uses FA imaging to evaluate small blood vessels in the eye for early signs of damage linked to sickle cell disease.
    • Brain Imaging Review (Cerebral Vasculopathy Study): Reviews brain imaging to better understand how to prevent strokes in children with sickle cell disease.
    • EMPOWER Study: Works with teens and young adults to design and test educational tools that support decisions about disease-modifying therapy.
    • Delaware Sickle Cell Surveillance Study: Uses statewide health data to understand how sickle cell disease affects children and families across Delaware.
    • Sickle Cell Contraceptive Practices Study (COBRE): Explores reproductive health and contraceptive needs among individuals with sickle cell disease.

    • CSL889 Study: Tests hemopexin as a potential treatment during painful vaso-occlusive crises.
    • Hibiscus 2 Study (Etavopivat): Evaluates the safety and effectiveness of etavopivat in adolescents and adults with frequent pain episodes.
    • Osivelotor Study: Studies an oral therapy (osivelotor) designed to improve hemoglobin levels in people with sickle cell disease. Currently on hold.
    • Oxbryta Registry: Follows children and teens taking Oxbryta to understand long-term outcomes and quality-of-life changes.
    • Oxbryta Expanded Access Program: Provided early access to voxelotor for young children with sickle cell disease. Closed to enrollment.

    • ASCENT Study (Abatacept After Transplant): Studied whether abatacept can reduce graft-versus-host disease after bone marrow transplant.
    • Project Sickle Cure: Examines how bone marrow transplant affects brain health, learning, and long-term function in children with sickle cell disease.
    • Haploidentical Bone Marrow Transplant Study: Tests the safety of using a partially matched family donor for bone marrow transplant.

    • GRNDaD Registry (Global Research Network for Data-Driven Decisions): A national registry collecting long-term clinical data to improve sickle cell care.
    • ASH Research Collaborative Sickle Cell Disease Registry: Collects medical data nationwide to advance research in hematology, including sickle cell disease.
    • AUNT Study (Auntie Study – NASCC): A longitudinal study following adults with sickle cell trait through annual visits to learn how SCT affects long-term health.
    • Transition of Care (EPIC Note) Study: Focuses on strengthening communication and planning as teens move from pediatric to adult sickle cell care.

    • Chronic Pain and Self-Efficacy Study: Examines how children and teens manage chronic pain and what supports improve daily functioning.
    • Sickle Cell Trait Documentation Study: Improves how trait results are documented and discussed with families.
    • SPM Study:Tracks patterns in sickle cell management to identify opportunities for better care.
    • DISPLACE Study (Dissemination and Implementation of Stroke Prevention Looking at the Care Environment): National study focused on increasing stroke screening in children with sickle cell disease.
    • SCIENCE Study (Sickle Cell Improvement: Enhancing Care in the Emergency Department): Multicenter project improving emergency department care for families experiencing pain crises.
    • SCThrive: Explores new ways to support teens and young adults living with sickle cell disease.
    • Perspectives on Research Participation Study: Invites families to share their experiences with research to help the program improve communication and support.

    Related Research & Clinical Focus

    The work funded through this award connects to a broader network of research centers, clinical programs, and specialty teams across our system.