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Acute myeloid leukemia (AML) is a blood cancer that affects children. AML treatment involves intensive chemotherapy that requires over 140 days in the hospital. This places immense financial burden on families including medical bills, transportation costs, childcare, and missed days from work. This burden and resulting distress are called financial toxicity. Dr. Zheng's research is focused on measuring financial toxicity and trying to figure out what can be done about it. One important idea to consider is that many parents quit their jobs or reduce their hours to care for their child. Dr. Zheng plans to use surveys and interviews to gain a clearer picture of how work disruptions develop over AML treatment and lead to financial toxicity. Dr. Zheng wants to identify what work arrangements and policies could offer the most support. Ultimately, it could lead to advocating for more flexible work schedules, remote work options, or other accommodations that could make a real difference for these families.

Acute kidney injury (AKI) commonly occurs during therapy for acute lymphoblastic leukemia (ALL). Small studies in pediatric ALL have suggested that AKI increases the chance of dying or the treatment not working. AKI may also lead to permanent chronic kidney disease (CKD) in survivors. This has never been investigated in a large population of children with ALL. This project will use data from the multicenter Leukemia Electronic Abstraction of Records Network to investigate how different types of AKI impact survival from ALL and the development of CKD. Dr. Hsiao and colleagues will enroll children who have completed ALL therapy into a study to assess markers of kidney function over the subsequent year. This study will be critical to inform recommendations for how doctors screen for kidney-related problems in childhood ALL survivors. This is only a first step; once completed, Dr. Hsiao and team can then expand these efforts to understand kidney damage from treatments for other types of cancer too. This grant is named for To-morrow's Research Fund, a Hero Fund created to honor Becky Morrow who is a childhood cancer survivor. Becky was diagnosed with acute lymphoblastic leukemia when she was 12 and endured grueling treatments and its side effects. Today she is cancer free, a wife and a mom but suffers late effects. This fund supports survivorship research for safer treatments that help kids not only survive but thrive.

Children everywhere in the world get cancer but their chances of surviving differ based on where they live. Disparities in childhood cancer diagnoses and survival have been described by sex and age, but there are gaps in this literature from countries with limited resources. The first goal of Dr. Force's project is to analyze how childhood cancer diagnoses and survival differ by sex, age, and world region, using data from the most comprehensive international collection of hospital cancer registries, and to assess potential underlying drivers of these disparities, which would be beneficial in identifying interventions to improve equity in childhood cancer outcomes. The second goal of Dr. Force's project is to compare childhood cancer data from hospitals and population-based cancer registries, to determine whether hospital data could be used to supplement information on childhood cancer burden where data is currently lacking in global models, better illuminating the disparities that exist globally.

It is known that children with cancer have higher rates of hospitalization, ICU admission, and death than children without cancer and COVID-19. Children with cancer and COVID-19 also frequently have changes in their chemotherapy. Yet, critical data is lacking regarding COVID-19 in children with cancer and guidelines about how to manage these vulnerable children. Dr. Johnston and collegaues will leverage the national registry of children with cancer and COVID with data on >2,400 children from >100 institutions to examine (1) how the clinical course of children with cancer and COVID-19 compares to earlier in the pandemic, (2) how the clinical course of COVID-19 in children with cancer is impacted by vaccination and antiviral therapy, and (3) physician and healthcare systems factors that influence COVID-19 management. Dr. Johnston will use that information, literature review, and expert discussion to inform an expert panel tasked with developing guidelines for management of COVID-19 in children with cancer.

Even after being cured, childhood cancer survivors face challenges to living a healthy life, and one major challenge is heart disease. Heart health is closely linked to healthy eating, but many survivors cannot eat as healthily as they want because they don't have access to, or can't afford, healthy foods ("food insecurity"). Dr. Aziz-Bose will enroll survivors in this study to ask what they are eating, and understand whether they experience food insecurity and other conditions that put heart health at risk. Survivors will also be interviewed for their ideas about how to support healthy eating, including the best ways to directly give families healthy foods, an approach called "food is medicine." Using this information, Dr. Aziz-Bose will fine-tune a "food is medicine" intervention that she developed, and test it on a larger scale to see its impact on food insecurity and heart health. The goal being to understand and tackle barriers to healthy eating so all survivors can have the best health possible. This grant is funded by Allied World, a global provider of insurance and reinsurance solutions.

This grant supports a Clinical Research Associate to ensure that more kids can be treated on clinical trials, often their best hope for a cure.

This grant supports a Clinical Research Associate to ensure that more kids can be treated on clinical trials, often their best hope for a cure.

The Loma Linda University Children's Hospital (LLUCH) services a four-county region (San Bernardino, Riverside, Inyo and Mono Counties). For the 1.3 million children living in this region, 25% come from families that live in poverty and are uninsured. This population represents 80% of the children treated here. This grant supports a Clinical Research Associate to ensure that more kids can be treated on clinical trials, often their best hope for a cure. The participation of this patient population in clinical trials is critical for the identification of therapies that can alleviate this health disparity and effectively treat all children.

This grant supports a pediatric-focused Clinical Research Coordinator to ensure that the children of central New York have a variety of clinical trials so that they do not have to leave the region to attain this level of care, often their best hope for a cure.

Children receiving bone marrow transplant can have serious complication such as bloodstream infections and graft versus host disease and some children die of these complications. Alteration of the bacteria in the gut by treatments including antibiotics is an important cause of these complications. In a previous study Dr. Davies and colleagues have tested the use of human milk to help keep gut bacteria healthy in very young children and found that this treatment worked. They are now studying a purified sugar from human milk, 2-FL that can be given easily as a medicine. Dr. Davies will also test a novel rapid urine test and a blood test to assess health of the gut bacteria during the study. Current tests require a stool sample and can take a long time. This trial will generate the data needed to perform a large-scale multi-center randomized clinical trial that will best prove how well this treatment works. This grant is generously supported by the Rays of Hope Hero Fund which honors the memory of Rayanna Marrero. She was a happy 3-year-old when she was diagnosed with Acute Lymphoblastic Leukemia (ALL). She successfully battled ALL, but a treatment induced secondary cancer claimed her life at age eight. Rayanna had an amazing attitude and loved life. She, like so many kids facing childhood cancer, did not allow it to define who she was. This Hero Fund aspires to give hope to kids fighting cancer through research.

In Africa, the majority of children who get cancer die from their disease. This happens in many cases because the patients do not get a correct diagnosis. Without a precise and correct diagnosis, these children cannot benefit from the newest curative treatments. To help prevent this from happening, Dr. Lutwama will develop and test a strategy to diagnose pediatric cancer correctly in a manner that is affordable, reliable, and within a shorter time frame in resource-limited settings.

In Africa, the majority of children who get cancer die from their disease. This happens in many cases because the patients do not get a correct diagnosis. Without a precise and correct diagnosis, these children cannot benefit from the newest curative treatments. To help prevent this from happening, Dr. Lutwama will develop and test a strategy to diagnose pediatric cancer correctly in a manner that is affordable, reliable, and within a shorter time frame in resource-limited settings.

We know that mental health and physical health are closely connected. For example, teenage cancer patients who receive bone marrow transplants have high rates of anxiety, depression and other mental health issues, which have in turn been associated with relapse and even death rates. Researchers have recently discovered that the immune system may be an important link between the mind and the body -- psychological stress can create a specific pattern of molecular responses in immune cells, which causes inflammation and may produce poor outcomes in cancer. To see if the molecular response pattern indeed associates with altered immune cell function and with mental health symptoms, Dr. Taylor will study blood samples and quality-of-life surveys that are collected from teenage patients undergoing bone marrow transplant. If we can understand the biology of how a teen's mental state affects the cancer in their body, we can develop better ways to improve both psychological and medical outcomes in these vulnerable patients.

Bone marrow transplantation is a highly effective treatment for relapsed and difficult to treat forms of pediatric leukemia, but unfortunately has a high risk for dangerous side effects. Viral infections are a major problem in the weeks and months after bone marrow transplant while children's immune systems are still immature. These infections can be debilitating and even deadly while also being very difficult to treat since available antiviral medications frequently do not work. Over the last few years, researchers have had great success in combating these viral infections by taking T-cells (a type of infection fighting cell that is part of the immune system) donated by children's personalized stem cell donors and engineering them to attack and kill certain viruses. Additionally, the rates of side effects using this therapy have been incredibly low. Dr. Rubinstein now intends to offer this therapy as a preventative measure, with the hope that this strategy will decrease the number of patients suffering from dangerous viral infections after bone marrow transplant. This clinical trial has the potential to decrease the number of pediatric cancer survivors who die from infection while also shortening hospitalizations and decreasing the need for other anti-viral medications. This grant is generously supported by the Rally for Ryan Fund, a St. Baldrick's Hero Fund. Ryan was diagnosed with ALL when he was 7 years old and began treatment immediately. Initially labeled “high risk” due to a poor response, he completed 3½ years of a difficult treatment protocol before relapsing 11 months later. After his third relapse and an unsuccessful immunotherapy trial, Ryan had a bone marrow transplant in December 2020. He is currently fighting graft vs. host disease but is doing well and is optimistic for a good response. The Campanaros created this Hero Fund to celebrate Ryan’s courageous spirit and knowing firsthand the importance of research, to raise funds to find better treatments for kids with cancer.

Although rates of cure for childhood cancer have greatly improved in recent years, thousands of children continue to suffer from advanced, incurable cancer. Healthcare professionals bear a responsibility to ensure that the care of children with advanced cancer meets the goals and wishes of patients and their families. However, we do not know whether we fulfill this aim in pediatric cancer care. Dr. Ananth's prior research reveals intensive healthcare use near the end of life for children with advanced, incurable cancer. This includes lengthy stays in the intensive care unit and common use of interventions like breathing tubes. Yet, healthcare professionals worry that intense care toward the end of life for children with cancer may increase child and family suffering. In adults with cancer, quality measures have been developed to evaluate where care is most intense, or poor quality. This has consequently allowed researchers to develop interventions to improve the quality of care for adults with incurable cancer. Unfortunately, there are no comparable measures or standards for what constitutes good, or high quality, end-of-life care for children with cancer. Dr. Ananth seeks to address this problem. The overall objectives of this research are to (1) refine a list of potential measures of high quality end of life for children with cancer, and (2) develop an innovative questionnaire to systematically evaluate whether patients are receiving high quality end-of-life care. She hopes that, through this work that is distinctly family-centered, she can develop interventions to enable healthcare teams to provide optimal, compassionate care for children who have incurable cancer.

Unfortunately, kids with cancer suffer from symptoms related to their cancer and cancer treatments. These symptoms are often not fully appreciated by their health care providers and hence may be undertreated. Doses of cancer treatments are decreased or cancer treatments are even stopped when symptoms from cancer treatments aren't well controlled. Improving symptom assessments for kids with cancer will enhance health care providers' ability to track and manage kids' symptoms, to identify symptom trends, and could even prevent changes in cancer treatments due to poorly controlled symptoms. The Patient Reported Outcome Common Terminology Criteria for Adverse Events (Pediatric PRO-CTCAE) is a recently-developed survey that allows kids with cancer and their parents to directly report the type and severity of kids' symptoms to health care providers. This tool includes 130 questions about 62 different symptoms. However, since there are so many questions in this tool, the symptoms that are asked about are pre-selected by researchers or health care providers. Pre-selecting the questions prevents kids and parents from reporting all of a kid's symptoms, risking symptoms being missed. The overall objective of Dr. Crane's research is to refine and pilot test a novel web-based interface for the Pediatric PRO-CTCAE that will allow kids and parents to systematically and easily report all of a kid's symptoms on a routine basis, but without having to answer 130 questions.

Children with acute lymphoblastic leukemia (ALL), a cancer of the blood, who receive modern therapy have a high likelihood of being cured. A side effect of treatment in some survivors of ALL is lifelong troubles with learning and memory. One part of therapy that may increase the chance of having learning and memory problems is many exposures to anesthesia. Treatment for ALL includes painful procedures for which children routinely receive anesthesia. Understanding the connections between specific anesthesia medicines, their doses, and the length of time they are given and the chances of having learning problems later on will be important for patients, families and clinical teams in making the best choices for anesthesia use.

Brain tumors are one of the most common and deadliest forms of pediatric cancers. Those who do survive may experience late effects including cognitive, emotional, and social difficulties. Additionally, Columbia University Medical Center in New York, New York has some of the highest rates of COVID-19 cases in the U.S. Thus, the children and their families facing diagnoses of pediatric brain tumors, and the health care providers treating them, were faced with incredibly difficult decisions, at a time when the entire medical system was in a state of upheaval, and questions were being raised as to who should be treated and saved. In medicine shared decision making involving parents, children (when possible) and health care providers is recommended in situations where there is not a clear superior treatment, which may be the case for many pediatric brain tumors. This study aims to understand the factors parents, healthcare providers, and the children themselves considered when making health care decisions. This includes how they balanced potential short-term and long-term challenges with quality of life and longevity of life, what information informed their decisions, and how the COVID-19 pandemic influenced the decisions they were making. This information will provide important insight into how decisions are made, particularly in times of heightened crisis. This will make us better able to help families, patients, and children.

Pain is one of the most common and distressing symptoms that children with cancer face. Pain can persist between clinic visits but may not be reported unless the child is specifically asked. Dr. Linder's team co-designed a game-based symptom reporting app, Color Me Healthy, with elementary school-age children with cancer. In the initial test of the app among children receiving chemotherapy, more than half of children's symptom reports included a report of pain. Parents reported that the app helped them better understand their child's symptoms. Children and parents also gave important feedback to improve the app. During the first phase of the study, Dr. Linder will use feedback from children and parents to make important changes to the app to enhance how children report pain using the app and how children's data can be understood by parents and clinicians. In the second phase of the study, she will ask children to use the newly enhanced pain assessment feature and ask how parents and clinicians used children's data to help relieve their pain. Completing this study will allow Dr. Linder to use the app in a larger study to improve pain management and quality of life among children receiving cancer treatment.

A growing number of childhood cancer survivors have been treated with high-dose chemotherapy. This high-dose chemotherapy places the survivors at risk for cognitive problems, affecting their thinking skills, processing speed, attention, and memory. Downstream effects of cognitive impairment include difficulties with independent living as they transition into adulthood. Currently, there is limited information as to whether cognitive remediation interventions can improve cognitive functioning in childhood cancer survivors. Cognitive remediation is important for teaching effective decision-making and reasoning skills to enhance self-management and self-advocacy, which in turn could result in improvement in other areas, such as employment and independent living. In particular, given the barriers to accessing medical care (e.g., distance to medical center, reliable transportation), Dr. Murdaugh will use telemedicine to deliver this intervention. This study aims to assess the efficacy of a 4-week intervention delivered via telemedicine that teaches strategies to improve decision-making and reasoning skills in cancer survivors between the ages of 10 and 18 years old.