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When you think of the life you can give by successfully treating a small child or young person who has cancer or a blood disorder, it's easy to understand the importance of pediatric cancer and hematology research.
When we say we really care for kids, we're not just talking about medicines and treatments. When our patients and their families come to us, medical treatment can last months and, in many cases, years. That means they become a part of our team ... and part of our family here at the medical center. They touch our hearts and our lives, and that pushes us even harder to continue to advance the research and technologies available to them.
For many years cancer research and treatment focused on adults, but children have very special needs because their bodies are still growing and changing. What works for adults doesn't always work for kids, sometimes resulting in side effects and secondary conditions later in life. As an active research facility, we are at the forefront of treatments for kids from prenatal through early adulthood. This lets us work closely with each patient and the families to look at the options and advanced care–from genetics to stem cell transplants to targeted therapies–that otherwise might not be available to them.
Dr. Clarissa Johnson, director of the Sickle Cell Program at Cook Childrens, talks about advanced treatments and therapies as well as promising new clinical research on the horizon for sickle cell disease. Her extensive knowledge and passion for treating patients with sickle cell disease is the driving force behind bringing relief to hundreds of patients at Cook Children’s.
Dr. Kelly Vallance discusses how research through Cook Children's Targeted Therapeutics program is opening the door to the most advanced and promising clinical trials available to pediatric cancer patients—leading to higher response rates, less toxicities and more cures.
Not only do we build relationships with a global network of leading researchers, we also partner with our patients and parents starting on day one of the diagnosis; and it is only in the context of that relationship that we introduce the subject of research. Parents do not want to expose their children to risks, but most of them come to understand the concept of clinical trials. We explain how our clinical research has advanced the field of medicine and how it contributes to our cure rates here, as well as advances in oncology and hematology.
The goal of Children's Oncology Group (COG) members is to cure all children and teens with cancer, reduce the short- and long-term complications of cancer treatments, and determine the causes and find ways to prevent childhood cancer. Learn more about the COG and what it means to be a member here.
Although Cook Children's is not a traditional academic center affiliated with a university, we are academic in how we approach research and practice day in and day out. As a key collaborator with the nation's leading pediatric research organizations, our team offers the best available treatments and contributes to the search for a cure.
Cook Children's is a member institution or has received accreditation from several nationally-known cancer and blood disorder organizations for conducting research trials including:
We have also collaborated with several recognized research institutions including St. Jude Children's Research Hospital, Texas Children's Hospital as well as other high-performing regional academic institutions.
Not every cancer or blood disorder requires treatment through a current clinical trial. In fact, there are many cases that we can now treat and even cure with broad scope solutions, but those available treatments exist because of ongoing research. However, there are still many cancers and blood disorders that are rare or challenging for which there are no cures. For the children who are diagnosed with them, research often provides the best chance of recovery. It is for that reason that we are involved in research and our continued pursuit of a cure for each and every child. And we won't stop until we find a way to make childhood carefree and cancer free for all kids, now and in the future.
Many successful treatments have been made possible by research. The survival rate for childhood cancers has improved, in great part, due to clinical trials. In fact, many young cancer patients receive treatment by participating in clinical trials. In fact, 60 percent of cancer patients under the age of 29 are enrolled in trials.
What is a clinical trial?
Clinical trials are the final step in a long process of research. For many patients with cancer, especially children, they are the first step toward beating their disease. Clinical trials test new ways to find and diagnose cancer, treat cancer, manage symptoms of cancer and side effects from treatment and, ultimately, to prevent cancer.
Who should participate in a clinical trial?
If your child is diagnosed with cancer, clinical trials are an option you should discuss with your doctor. Many people believe that clinical trials are only for patients who are in the final stages of the disease or who aren't responding to treatments. But the truth is, there are clinical trials available for every stage of cancer.
What clinical trials are available?
Our team is currently active in clinical trials through many venues. Cook Children's must meet the guidelines of each group we partner with as well as successfully pass routine audits and site visits to be accepted and maintain privileges. The groups we currently partner with include:
Cook Children's Neuroblastoma program is interested in a range of topics relating to the care provided to our patients. Some of the current research interests include:
"It may be a hard decision for some families to get involved in research because it may not be the normal course of treatment, but I viewed this research as an opportunity. We don't have don't have a cure for neuroblastoma. We are working toward that with his research. We have to keep trying. We have to keep looking for the answer. If we can help other kids going through this, great. This is an opportunity not just to help yourself, but others too." – Elizabeth Head, Hayden's mom
At the age of 4, Hayden was diagnosed with stage VI neuroblastoma. In cancer terms, stage IV is considered a late and very aggressive phase of cancer. But there was cause for hope, a NANT research protocol that was a good fit for his particular case. He was enrolled immediately. Hayden went to the University of California San Francisco for MIBG therapy in October, 2009, at the time, one of only five places in the country offering this procedure. Fortunately for Hayden, Cook Children's is a NANT hospital and he was able to receive his post MIBG treatment close to home.
Hayden is now cancer free. His family is happily watching him gain back a healthy appetite and outgrow his clothes.
Cook Children's Neuroblastoma program has a clinical research team that is dedicated to making the health of children with neuroblastoma better.
Neuroblastoma is a solid tumor that forms within the nervous system (brain, spine, nerve tissue) of the body. While many neuroblastomas are easily treated with standard low-dose chemotherapy, aggressive forms of this disease, also called high-risk neuroblastoma, require far more aggressive treatment.
In 2008, Cook Children's was selected to join the New Approaches to Neuroblastoma Therapy (NANT) consortium, an organization comprised of just 15 hospitals throughout North America specializing in neuroblastoma research. NANT attempts to advance new therapies by conducting select early-phase clinical trials.
As a NANT site, Cook Children's actively participates in research on neuroblastomas in children. We are part of a very tightly knit group of expert physicians, researchers and investigators from 15 select university and children's hospitals that make up the consortium. Together, we are working continuously to test new therapies for high-risk and relapsed neuroblastoma and to advance neuroblastoma treatment for kids.
Presently, Cook Children's offers clinical trials targeting neuroblastoma cells that are resistant to established chemotherapy and radiation. This research is focused on finding treatments for otherwise hopelessly advanced neuroblastoma.
Clinical trials offer patients new approaches to treatment or drugs, as well as the advantage of a therapeutic approach that has been mapped out and reviewed by a team of investigators who specialize in the disease being studied – in this case, neuroblastoma.
Thanks to the generous support of our donors, and our NANT participation, children like Hayden can now experience their own miracles closer to home, as Cook Children's new cancer center includes an MIBG suite.
I-131 MIBG therapy is still considered a clinical trial. But for children with high-risk recurrent neuroblastoma, it may be the preferred course of treatment. This relatively new treatment enables the medical team to deliver radioactive iodine (RAI) therapy directly to the tumor cells without disturbing any of the body's healthy cells. Currently offered only through research trials, Cook Children's is one of only a dozen or so centers in the country to offer the this therapy for children.
NANT is supported by the National Cancer Institute. If you would like to learn about NANT, and the research that is being done for neuroblastoma patients, visit www.nant.org for more information.
For information on sponsored clinical research trials, collaborative group efforts, quality improvement and investigator-initiated research, please email us at firstname.lastname@example.org or call 682-885-2103.
The Children's Oncology Group joins together some of very brightest minds from around the world, all intent on understanding the causes of cancer so that we can cure cancer. We are proud to be a recognized COG cancer center ... not only for the research that we do, but for the treatments and cures we bring to the patients and families we treat here at Cook Children's.
Formed in 2000, Children's Oncology Group (COG) is the nation's largest and most established cooperative children's cancer research network for pediatric cancer research. It brings together treatment centers, physicians, laboratory scientists, nurses, psychologists and others working to beat cancer in children, adolescents and young adults. And Cook Children's is proud to be an active member, fighting cancer in kids every day.
The COG unites more than 8,000 experts in childhood cancer at more than 200 leading children's hospitals, universities, and cancer centers across North America, Australia, New Zealand, and Europe in the fight against childhood cancer. Through this collaborative research, the Children's Oncology Group has improved rates for children's cancer at a pace much faster than any one individual or single institution could accomplish alone.
The Children's Oncology Group research has turned children's cancer from a virtually incurable disease 40 years ago to one with an overall cure rate of 78 percent today.
Comprised of 210 treatment centers in North America, Europe, Australia, New Zealand and South Africa, COG includes more than 6,500 individual members.
Cook Children's is proud to be an active participant in these many accomplishments because they have a positive effect right here at home. And they help us to fulfill our promise to improve the health and lives of every child in our region – and beyond.
To learn more about COG, visit www.childrensoncologygroup.org.
If your child has been diagnosed, you probably have lots of questions. We can help. If you would like to schedule an appointment, refer a patient or speak to our staff, please call our offices at 682-885-4007.