All posts tagged: Research

Joint Webinar Presentation: The Pandemic’s Impact on the Pediatric Cancer Research Landscape

Solving Kids’ Cancer and Max Cure Foundation offered a joint webinar: The Pandemic’s Impact on the Pediatric Cancer Research Landscape Timothy P. Cripe, Chief of Hematology and Oncology at Nationwide Children’s Hospital moderated the session that featured an all-star line-up: Peter Adamson, MD – former Chair, Children’s Oncology Group (COG) and current Global Head, Oncology Development & Pediatric Innovation, Sanofi Mark Kieran, MD, PhD – Pediatric Clinical Trial Lead, Bristol Myers Squibb Jeffery J. Auletta, MD – Director of the Blood and Marrow Transplant (BMT) Program and the Host Defense and Immunocompromised Infectious Diseases Program at Nationwide Children’s Hospital. Carol Thiele, Ph.D, […]

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Kids First Second Chance: Engaging the Community in Fostering Pediatric Genomics Research

By Guest blogger Valerie Cotton, Kids First Program Manager, NICHD Childhood cancers and structural birth defects have profound, lifelong effects on children and their families. Birth defects are the leading cause of death in the first year of life, and cancer remains the leading cause of childhood disease-related mortality beyond the first year of life, according to the Centers for Disease Control and Prevention. Moreover, a child born with a birth defect is at a higher risk for childhood cancer, suggesting these conditions may be caused by shared genetic pathways. However, limited data and resources are available to investigate potential genetic [...] Read more

Except for Tissue

By Guest Blogger, CAC2 Student Member Nikki Lyons I always knew I wanted to be a scientist. This meant that when I was younger, I loved watching movies and shows featuring some scientific aspect. Their endless supplies of anything they could possibly need, the sparks of brilliance and the immediacy of working experience piqued an interest but were as far from the truth of the scientific process as they could be. Science is slow and arduous; it can go wrong at any step of the way. The first steps of science are pretty simple, observe something you’re interested in and […]

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Tissue Donation: The Critical but often Overlooked Piece of the Research Puzzle

Our February CAC2 All-Member webinar focused on the role that tumor tissue can play in childhood cancer research efforts.  Katie Gnatt from Alex's Lemonade Stand Foundation and Ginny McLean from Swifty Foundation welcomed Dr. Patrick Reynolds, Director of The Childhood Cancer Repository, and Dr. Angela Waanders, Director of Precision Medicine Oncology and Executive Board Chair of the Children's Brain Tumor Tissue Consortium to present the webinar. Dr. Reynolds spoke about tissue donation/collection during treatment and Dr. Waanders spoke on post mortem tissue collection.  As we move towards a world with less toxic, more personalized forms of treatment, the availability of different types [...] Read more

Collaboration and progress: How Target Pediatric AML facilitated LLS PedAL – a global master trial in acute leukemia

In our October All-Member Webinar, TpAML co-founder/advocate Julie Guillot and Dr. Gwen Nichols, Chief Medical Officer, Leukemia & Lymphoma Society, highlighted the energy and work behind putting -- and keeping -- the patient at the center of drug development. Participants had the opportunity to learn valuable insights on the makings of Target Pediatric AML (that a number of CAC2 members worked together on) and how research findings have spurred the launch of a groundbreaking global master clinical trial initiative in high-risk childhood leukemia, LLS PedAL. Read more

Childhood Cancer Data Initiative Symposium Overview

#ccdirocks trended on Twitter as participants at the Childhood Cancer Data Initiative Symposium shared the rocks they selected from among those painted by volunteers from the Dragon Master Foundation. “The rocks brought the children to the meeting, which was so important” –Warren Kibbe By Guest Blogger, CAC2 Member Caitlin Barrett (CureSearch) During the 2019 State of the Union Address, President Donald J. Trump raised the possibility of committing $500M over ten years to pediatric cancer research. The National Cancer Institute (NCI) is developing a plan to use this potential budget infusion to assist in the collection, distribution, and use of [...] Read more

Data Sharing in the Digital Age

Our April CAC2 All-member webinar was hosted by Amanda Haddock (Dragon Master Foundation) who welcomed and introduced fellow CAC2 member Dr. Warren Kibbe, Chief of Translational Biomedical Informatics in the Department of Biostatistics and Bioinformatics, and Chief Data Officer at Duke Cancer Institute.  Dr. Kibbe helped us all understand why we should all care about data sharing, a topic that roared into national prominence in the State of the Union speech in February 2019.  You can view the presentation by clicking the link below The role of publications, release of data, and well-documented scientific plans changed radically as we entered the digital [...] Read more

MyPART: My Pediatric and Adult Rare Tumors Network for Patient Engagement in Rare Solid Tumors Research

December's All-Member Webinar was presented by Dr. Karlyne Reilly, Director of the Center for Cancer Research Rare Tumor Initiative at the National Cancer Institute. Rare tumors pose unique challenges for patients, their families, and the researchers working to develop new therapies. In this webinar Dr. Reilly reviewed these specific challenges and how increased patient engagement in rare tumor research can help to overcome them. MyPART is a patient engagement network being developed in the Center for Cancer Research at NCI focused on children, adolescents, and young adults with rare solid tumors. Dr. Reilly described the network being developed and the goals to [...] Read more

Functional and Social Independence in Adult Survivors of Pediatric Brain Tumors

October's All-Member webinar was presented by Tara Brinkman, PhD, Assistant Member in the Departments of Epidemiology and Cancer Control and Psychology, St. Jude Children’s Research Hospital. Dr. Brinkman's recent, first-of-its- kind study sheds light on the degree of achievement of independence by survivors of pediatric brain tumors. Her talk highlighted the prevalence of independence and risk factors associated with non-independence in adult survivors. As part of the presentation, Dr. Brink reviewed the impact of independence on quality of life and emotional distress and discussed the implications for interventions. Read more

Understanding and Enhancing the Role of Children with Cancer and their Parents in Pediatric Oncology Drug Development

This month's webinar was presented by Stacy Crane, Predoctoral Fellow at Indiana University School of Nursing.  She described the experience of participating in a Phase I clinical trial from the perspective of the parents of children battling cancer. While overall, parents do not regret their child participating in a phase I clinical trial and would recommend participation to other parents of children with cancer, there are implications for clinicians and researchers who work with children with cancer and their families. One way to improve experiences in early phase clinical trial participation is to ensure that the side effects that impact the patients during these [...] Read more