Project:EveryChild: A game-changing resource in the fight against pediatric cancer

Project:EveryChild is a robust bank of blood and tissue samples from kids with cancer, and it’s opening the door to groundbreaking advances. But what exactly is a biobank? And how do samples get there? Learn about the game-changing advances that Project:EveryChild is fueling.

Nearly ten years ago, COG Group Chair Peter Adamson, MD, and a team of scientists came together with the bold vision: To create a biobank where every child treated for cancer at over 220 hospitals around the world could donate blood and tumor samples for research. Samples, along with information about a patient’s diagnosis and treatment, would be stored securely and used to answer some of the most pressing questions in pediatric cancer.

“I wasn’t part of that initial team, but I completely embraced the vision because it was so important,” says Stephen Skapek, MD , a pediatric oncologist in the Duke University Department of Pediatrics. “There was nothing like this in pediatric cancer and it could lead to major breakthroughs.”

Those researchers’ vision became a reality with Project:EveryChild (PEC), which officially launched in 2015. Now, PEC is a catalyst for discoveries and advances in pediatric cancer diagnosis, treatment and survivorship. Dr. Skapek has been involved with PEC since its early days and shares some exciting insights about the biobank.

First off, what exactly is a biobank?

A biobank, also called a biorepository, stores biological samples for research. Project:EveryChild stores samples like blood, saliva and tissue samples. These samples are securely stored until they are needed for research.

How do samples get from a patient to PEC?

PEC depends on patients, families and providers at 220 COG sites across the U.S. and a number of international sites. First, the care team asks parents or guardians if they would like to participate. If so, families provide some general information about their child’s diagnosis and care. Adult patients can also provide consent and information for themselves.

Then, a sample from the biopsy or surgery to remove the tumor gets sent to the operational site of Project:EveryChild, the COG Biospecimen Bank at Nationwide Children’s Hospital’s Biopathology Center opens in a new tab in Columbus, Ohio. There, Nilsa Ramirez, MD, who is an expert in pediatric cancer biobanking, orchestrates a large team of laboratory technicians, administrative assistants, and other physicians to process and securely store biospecimens and the associated clinical data. Scientists around the world can reach out to COG and the Biopathology Center and propose research projects using the samples.

What kind of information does PEC store?

One of the most valuable things about PEC is that it not only collects biospecimens, but also important medical data such as the child’s age, what treatments they had and certain outcomes, such as whether the cancer came back after treatment.

This is extremely valuable because it allows researchers to ask questions like what do cancers that never come back after treatment have in common? And what’s different between one child whose cancer was gone for good after initial treatment and another whose cancer came back? Many COG clinical trials use PEC to screen patients for eligibility prior to study enrollment, along with biobanking samples collected prior to starting treatment to be used to compare to samples collected later in treatment.

PEC can also help us understand long-term consequences of cancer treatment, even those that don’t show up for months or years. For example, we’re learning that leukemia treatment can cause certain children to have trouble thinking and learning in school long after they were treated. Treatments for sarcoma may lead to issues with a child’s kidneys or heart problems later in life. PEC is enabling scientists to better understand what makes children more prone to these lasting effects and how we might lessen or prevent them. We believe in a future where the treatments that enable a child to survive cancer don’t lead to significant health problems as a child grows up.

What kinds of questions does PEC enable you to answer?

PEC can help answer a wide range of questions – such as why children develop osteosarcoma (a cancer that commonly starts in bones in adolescents) or why Hodgkin lymphoma sometimes comes back after treatment.

Much of my own research focuses on rhabdomyosarcoma (a solid tumor resembles immature muscle cells), examining why treatments are effective for some but not all children with the disease. One approach to answer that type of question is to look for biomarkers — often specific biological characteristics of a tumor, like staining for a certain protein on the tumor cells. We try to evaluate whether that staining differs in tumors that do or do not respond well to the treatment. For example, say children who did not respond well to chemotherapy have the same protein expressed on the tumor. That could ultimately lead to more personalized treatments where different treatment could be used in those with high expression of that protein. These insights could also point researchers in the direction of how they might make existing treatments more effective.

What is one or a few exciting discoveries that have been made using samples from PEC?

Right now, 22 COG clinical trials are using Project:EveryChild to screen for patients clinical trials and biobanking samples from those trials. Enrolling in PEC is the first step to enrolling with COG’s Molecular Characterization Initiative (MCI). It’s also enabling research into genetic linkages such as links between Down syndrome and leukemia or birth anomalies and other types of cancer.

What’s one current PEC study that you’re really excited about?

One of the biggest questions in cancer is why it sometimes comes back after treatment — even after a patient has had follow up scans that show no signs of cancer. Brian Crompton, MD opens in a new tab, Research Co-Director, Solid Tumor Center and Associate Professor of Pediatrics at Harvard Medical School is using PEC samples to look for microscopic amounts of tumor DNA circulating in the blood. Trace amounts of cancer DNA in the blood wouldn’t show up on a typical scan. This might explain why a person may have a clear scan, but their cancer comes back months later.

Now, Dr. Crompton is examining blood samples from children with neuroblastoma, sarcomas and Wilms tumor. He will examine how trace amounts of cancer DNA in the blood may correlate with how severe their cancer is and how they do in the long-term.

This research could result in a remarkable way to monitor children and to predict overall prognosis. It could be a very powerful tool, and it would not be possible without a resource like PEC.

Why is donor support important to PEC?
The COG Foundation pools funds from a network of philanthropic organizations and acts as a centralized funding source for hospitals that enroll children on to Project:EveryChild. Those donated funds help COG member institutions biobank various types of biospecimens at diagnosis and relapse, and enable researchers to collect data on each patient’s treatment to-date, family medical history, and registry information for future follow-up.

Government funding for initiatives like Project:EveryChild, that support infrastructure rather than asking a specific research question, is limited. But building the infrastructure — the equipment, technology and physical space to store precious biospecimens — for PEC allows us to ask and answer countless more research questions.

For donors who are interested in helping battle childhood cancer, PEC is an extremely valuable place to invest in because it fuels countless discoveries across many types of cancer. We are so grateful for everyone who supports this work. Collectively your impact has paved the way for hundreds of studies that would otherwise be decades away.

What’s your favorite part about working in pediatric cancer research?

There is a team aspect to pediatric cancer research that I really appreciate. It takes a big team to make something like PEC a reality. We need coordinators and providers around the country to make this happen. It’s a big commitment from so many people, and it’s making a profound impact.

Dr. Skapek serves through the B+ Foundation Scientific Advisory Board

In addition to studying pediatric cancer, Dr. Skapek is one of several physician-researchers who make up the Andrew McDonough B+ Foundation opens in a new tab Scientific Advisory Board. Together, this group helps B+ Foundation leaders strategically direct grants toward research projects that will have the greatest impact on patients.