91��Ƭ�����߿�

91��Ƭ�����߿� Center for Cancer and Blood Disorders

Research Transforming Care: Care Transformed by Research

At the 91��Ƭ�����߿� Center for Cancer and Blood Disorders (NCCBD), our impressive team of pediatric specialists is as committed to researching new treatments and cures as they are to providing the very highest level of clinical care for children.

Through the combined expertise of physicians and researchers across our centers for cancer and blood disorders��(at sites in Delaware and Florida), we have almost unmatched resources available to bring the latest advances in science from the laboratory bench to the bedside, to share information, and to arrive at best practices in children’s health.

At the 91��Ƭ�����߿� Center for Cancer and Blood Disorders (NCCBD), pediatric cancer research is very much a group effort. Our physicians not only deliver care, they’re actively involved with research and in constant contact with the research scientists in our labs. And we're fortunate to have excellent leadership. Our physician leaders participate or play a leadership role in a variety of national cancer organizations and studies.

��

The program is led by Dr. Kolb, who’s heavily involved in advanced research programs to find new cancer drugs that are more effective, with fewer side effects. A founding member of the Pediatric Preclinical Testing Program (PPTP) and the newly appointed chair of the Myeloid Disease Committee of the Children’s Oncology Group (COG), Dr. Kolb also led the effort to obtain Foundation for the Accreditation of Cellular Therapy (FACT) accreditation for 91��Ƭ�����߿� Children’s Hospital, Delaware.

In addition, Dr. Kolb is the director of the 91��Ƭ�����߿� Center for Cancer and Blood Disorders and Associate Director of the National Cancer Institute Community Oncology Research Program (NCORP). He’s on a number of COG and Sarcoma Alliance for Research through Collaboration (SARC) committees, and a member of the Pediatric Working Group of the American Association of Cancer Research.

��

Dr. Miller serves as 91��Ƭ�����߿� Children’s Hospital, Delaware’s “Cancer Control Champion” for the Children’s Oncology Group (COG). She’s also the director of the Sickle Cell Program at the hospital and has been awarded the Delaware End-of-Life Coalition Physician Excellence Award.

��

Dr. Sandler serves as director of National Cancer Institute Community Oncology Research Program (NCORP) and associate director of NCCBD. Dr. Sandler is on several Children’s Oncology Group (COG) committees, including the Voting Body Steering committee, and is a member of the COG voting body.

He has chaired or served on study committees for a number of clinical trials and has been the Jacksonville institutional Principal Investigator for COG since 2000. He also serves on the Cancer Control Subcommittee on Nutrition, Florida Governor’s Cancer Control and Research Advisory Board, Board of Directors of Wolfson Children’s Hospital, and as chair of the 91��Ƭ�����߿� Pharmacy and Therapeutics Committee. Dr. Sandler was also honored with the National Lane Adams Award for compassionate care from the American Cancer Society.

��

Dr. Bradfield is our Cancer Control Champion for Florida, and committee member of our Community Clinical Oncology Program. Dr. Bradfield is an assistant professor of Pediatrics at Mayo School of Medicine and Associate Division Chief at 91��Ƭ�����߿� Children's Health, Jacksonville. He has been the Cancer Committee Chairman in Jacksonville for many years, emphasizing quality of care with improved outcomes. His main research focus is in cancer control, currently serving as the Study Principal Investigator for a Suncoast Research Base cancer study.

��

A nationally recognized expert in pediatric bleeding disorders, Dr. Gauger has been at 91��Ƭ�����߿� Children's Health, Jacksonville since 2000. She is an Assistant Professor of Pediatrics at the University of Florida Medical School. She also serves as the Medical Director of the Hemophilia Treatment Center and is very active with the national and state Hemophilia Foundations. Dr. Gauger’s primary areas of interest are in hemostasis (a process which causes bleeding to stop), sickle cell disease thrombosis (blood clots in sickle cell patients), and benign hematology (the study of blood, blood-forming organs, and blood diseases).

��

Dr. Joyce has been with 91��Ƭ�����߿� Children's Health, Jacksonville since 1990 and has run our hematopoietic stem cell transplantation (HSCT) program since 1994. He currently serves as both the overall program director and director of the pediatric Blood and Marrow Transplantation Program of the Mayo Clinic, 91��Ƭ�����߿� Children’s Clinic, and Wolfson Children’s Hospital. He’s also served as the Chair of the Institutional Review Board (IRB), which ensures that safe research protocols are followed and that participants are protected for the Baptist Health Care System since 2004. Dr. Joyce’s interests include stem cell and umbilical cord blood transplantation.

��

At our 91��Ƭ�����߿� Children’s Hospital and 91��Ƭ�����߿� Children's Health, Downtown Orlando, Dr. Nagasubramanian is the division chief of Pediatric Hematology-Oncology for our clinic, and has a distinguished history in cancer care and research. He is a member of the COG voting body, and serves as the Site Lead Investigator for our Orlando site.

One of Only Three National Cancer Institute Community Oncology Research Programs (NCORPs) in the Country

The 91��Ƭ�����߿� Center for Cancer and Blood Disorders (NCCBD) is one of only three pediatric National Cancer Institute Community Oncology Research Programs (NCORPs) in the United States. Through a $4.65 million NCORP (pronounced “en-cor”) award, all four of 91��Ƭ�����߿�’ core pediatric oncology (cancer) locations participate:

• 91��Ƭ�����߿� Children’s Hospital, Delaware (in Wilmington, Del.)
  
• 91��Ƭ�����߿� Children's Health, Jacksonville (in Jacksonville, Fla.)
• 91��Ƭ�����߿� Children’s Hospital, Florida��(in Orlando)

The NCORP award acknowledges that 91��Ƭ�����߿� is a fully integrated pediatric cancer network with excellence in clinical research, clinical care and quality improvement.

��

The Goals of Our NCORP

The 91��Ƭ�����߿� Center for Cancer and Blood Disorders is considered an NCORP “community site.” That means each of our locations strives to:

• increase community engagement in the care of children with cancer by enrolling participants in clinical trials (research studies that evaluates the use of a new intervention — such as a new drug, device, treatment or technique — on human subjects with a particular disease or condition)
  
• better understand the science of delivering high-quality pediatric cancer care in the community setting — including treatment, symptom and pain management, and outcomes (e.g., survival rates and side effects)
• reduce childhood cancer care disparities (differences or inequalities) and expand access to care for underserved minority and socioeconomic populations.

��

Why Is “Community-Based Cancer Research” So Important?

There are a number of reasons why our pediatric NCORP can make a big impact on caring for children with cancer. But the bottom line is that community-based cancer research allows kids to get high-quality pediatric oncology care while staying close to you, their friends and support systems, as well as their own local doctors and health organizations.

Clinical trials need a certain number of participants for the trials to not only start, but for them to succeed in discovering new and better treatment and care options. So the more families and health care providers in your community know about the availability of clinical trials right in their own backyard, the more children can be enrolled in trials to explore treatment options that could increase the chance of a cure — and with fewer treatment side effects.

Renewal of Center of Biomedical Research Excellence (COBRE) Grant Elevates 91��Ƭ�����߿�' Sickle Cell Disease Research

Thanks to a $10.5 million, five-year Center of Biomedical Research Excellence (COBRE) (Phase 2) grant awarded (P20GM109021) by the National Institute of General Medical Sciences (NIGMS) at National Institutes of Health (NIH), the 91��Ƭ�����߿� Center for Cancer and Blood Disorders (NCCBD), has established the Delaware Comprehensive Sickle Cell Research Center. As a children’s health network, 91��Ƭ�����߿� is poised to become a national leader in sickle cell research, helping to train the next generation of sickle cell researchers.

In the first 5 years of the grant (COBRE, Phase 1), which was initially launched in 2014, 91��Ƭ�����߿� Center for Cancer and Blood Disorders Phase 1 approach included:

• increased access to innovative clinical trails for children with sickle cell disease
• established a sickle cell genomics program��
• supported collateral research that brought in more than $13 million in federal and private foundation grant funding to Delaware.
• invested substantially in sickle cell education and clinical programs to improve clinical care for children and young adults with sickle cell disease
• developed strong collaborations with Delaware State University, Christiana Care Health Services and IDeA Networks for Biomedical Research Excellence (INBRE)��

A genetic disorder of the red blood cells, sickle cell disease is a chronic and potentially debilitating disease of childhood. In its severe form, sickle cell disease can affect multiple organ systems and ultimately shorten the lifespan. Many patients with sickle cell disease face barriers that may impact their quality of care and health outcomes. 91��Ƭ�����߿� is poised to approach the disease with an effort of awareness and clinical research, that will help promote the challenges patients go through every day. 91��Ƭ�����߿� Center for Cancer and Blood Disorders is driven by the hope of finding a cure.

The COBRE Grant Phase 2 Goals

Through the COBRE, Phase 2, the Delaware Comprehensive Sickle Cell Research Center focuses on continuing to study effective ways to improve care and outcomes for affected children. So the Delaware Comprehensive Sickle Cell Research Center will work to:

• prevent sickle cell disease symptoms
• offer families strong psychosocial support
• improve upon phase 1 research infrastructure build��
• study the quality of sickle cell disease care
• evaluate genetic approaches to treatment and a cure
• address issues of racism and stigma that lead to poor quality care and patient disenfranchisement

Imagine being able to travel inside of your own body. What would it be like to explore and see what is happening? Our team wants to reinvent health education to allow patients and their families to do just that.

Researchers, clinicians and patient education specialists at 91��Ƭ�����߿� Children’s, technology designers at Sam Houston State University, and youth with sickle cell disease and their families are partnering to design, build and test a virtual reality (VR) educational program called CyberCell.

The goal of CyberCell is to provide evidence-based, immersive and interactive education about sickle cell disease and treatment options to stimulate deeper learning and increase motivation for healthy behaviors in teens and young adults with sickle cell disease.

Pediatric Psychologist & Research Lead
91��Ƭ�����߿� Children’s Health

Fredric Freeman, MS
Creative Director/VR Design & Development
Sam Houston State University

Sherman Finch, MFA
Art Director, User Interface & Game Mechanics
Sam Houston State University

Pediatric Hematologist
91��Ƭ�����߿� Children’s Health

Medical Editor
91��Ƭ�����߿� Children’s Health

Danielle Morley, BSN
Care Coordinator/Patient Education Specialist
91��Ƭ�����߿� Children’s Health

Benjamin Bear, MSW
Research Coordinator
91��Ƭ�����߿� Children’s Health

David Rosario, MA
3D Modeling & Environment Design
Sam Houston State University

Acknowledgements

We thank the 91��Ƭ�����߿� Center for Cancer and Blood Disorders for supporting this project. We also thank the patients, families, healthcare providers, and design students and faculty who have contributed.

Want to learn more, get involved or donate to the project? Please contact us.