All posts tagged: Data

Guest Blog–National Cancer Institute Launches the CCDI Childhood Cancer Data Catalog

The Childhood Cancer Data Catalog is a searchable database of National Cancer Institute and other pediatric cancer resources and is part of NCI’s Childhood Cancer Data Initiative (CCDI), which is building a community centered around childhood cancer care and research data.  Through enhanced data sharing, investigators can improve understanding of cancer biology, preventive measures, treatment, quality of life, and survivorship, as well as ensure that researchers learn from every child with cancer. Recently, CCDI launched the CCDI Data Catalog web application, part of the CCDI Data Ecosystem.  The CCDI Childhood Cancer Data Catalog is an inventory of pediatric oncology data resources, [...] Read more

Guest Blog–National Cancer Institute Launches Molecular Characterization Initiative for Childhood Cancer Research

The National Cancer Institute’s new Molecular Characterization Initiative (MCI) fosters data sharing in childhood cancer research. The program currently offers comprehensive molecular characterization of tumors to children, adolescents, and young adults (AYAs) with newly diagnosed central nervous system tumors receiving care at hospitals affiliated with the Children’s Oncology Group. The DNA and RNA in participants’ tumors are analyzed through this voluntary, free program.    Participants’ tumor and blood samples are analyzed in an accredited lab, with results shared with families and doctors within 21 days. This detailed information about the cancer can be used to make a more precise diagnosis, […]

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Gabriella Miller Kids First Data Resource Center – Community Open House

On Friday, February 25, just ahead of the international observance of Rare Disease Day, you’re invited to join the NIH Common Fund-supported Gabriella Miller Kids First Data Resource Center (Kids First DRC) for a virtual Community Open House event, to learn more about the incredible resources available to the pediatric research community. Find out how data experts, lab scientists, and clinicians are reshaping the traditional model for medical research by sharing resources in real-time and uncovering common links across multiple pediatric diseases Get an overview of the powerful tools that have been developed, and the unprecedented trove of data and […]

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Children’s Brain Tumor Network Office Hours

Join the Children’s Brain Tumor Network(CBTN)’s operations center team as they address questions and technical issues related accessing CBTN data and conducting research within the Gabriella Miller Kids First Data Resource Portal, CAVATICA, and PedcBioPortal.

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CAC2 Webinar–Multimorbidity from Surviving Childhood Cancer: Using Data to Improve Shared Decision-Making

In our December CAC2 All-Member webinar, Mariah Forster Olson (Neuroblastoma Children's Cancer Society) represented the CAC2 Survivorship Interest Group and hosted Nickhill Bhakta, MD, MPH. Dr. Bhakta.  Dr. Bhakta discussed why the academic approach of thinking about one childhood cancer with one treatment exposure with one chronic condition is not a realistic way of solving long-term disease burden experienced by survivors.  He discussed his work and efforts to engage survivorship groups to guide relevant and meaningful improvements in decision-making between all stakeholders involved in the healthcare of the survivor. Read more

National Cancer Institute’s (NCI) Childhood Cancer Data Initiative (CCDI) Annual Symposium (Nov 9 & 16)

The aims of the public symposium are to provide an update on progress of the initiative, to hear from the childhood cancer community on recent research, and to gain input from the broad community on the activities of CCDI. The agenda, registration, and abstract submission details for poster presentations are forthcoming. Please email Childhood Cancer Data Initiative if you have any questions. We look forward to seeing you in November 2021. About CCDI CCDI is building a community centered around childhood cancer care and research data. Through enhanced data sharing, we can improve our understanding of cancer biology to improve […]

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Gabriella Miller Kids First Pediatric Research Program’s (Kids First) 2021 Fall Webinar

The webinar will include an update on the program from NIH staff, and presentations featuring findings from Kids First investigators and other data users from the pediatric research community. In addition, the Kids First Data Resource Center (Kids First DRC) will demo the latest analysis tools and resources in development within the Kids First Data Resource. Researchers, patients, and foundation communities are invited to attend this open session.   Webinar Agenda (Tentative): Introduction – NIH Kids First Staff Findings from the Kids First X01 Project on Familial Predisposition to Hematopoietic Malignancies – Jamie Flerlage, MD, MS Q&A Session w/ Dr. Flerlage […]

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Pediatric Cancer Data Commons: A Story of Impact and Promise

Have you heard of the ways in which data science is advancing pediatric cancer research?  You may be interested in watching our October All-Member Webinar. CAC2 Member Mariah Forster Olson (Neuroblastoma Cancer research Foundation) introduced Dr. Sam Volchenboum, who spoke about his work leading the Pediatric Cancer Data Commons at the University of Chicago Medicine.  During the presentation Volchenboum highlighted the ways in which data science is advancing pediatric cancer research and discussed how this work can be influential for cancer survivors.  He was gracious enough to answer the many questions posed by our members. Dr. Volchenboum graciously allowed us [...] Read more

Guest Blog–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

CAC2 Webinar–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

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