All posts tagged: Data

Thankful and Fearful

November 21, 2022
Blog Posts, Community News, Member Blogs, Research Explained No comments yet

By CAC2 Individual Member Joe Baber Because of my grandson, Conor, a neuroblastoma survivor, I have met so many people in our childhood cancer community who want to improve the outcomes of children fighting cancer. We either have children in treatment for cancer or have children who are survivors or have died because of it.  We’re all thankful when there are lifesaving therapies and at the very same time, we are fearful of relapse, side effects of the drugs, chemotherapy, radiation, surgery and even death.  These contrary and parallel emotions seem to be linked in partnership throughout the childhood cancer […]

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Childhood Cancer Data Initiative Welcomes Dr. Gregory Reaman as Its New Scientific Director

November 17, 2022
Blog Posts, Community News, Guest Blogs No comments yet
This month, Dr. Gregory Reaman was named by the Childhood Cancer Data Initiative (CCDI) as the new Scientific Director. In this role, Dr. Reaman will develop, direct, and coordinate CCDI programs and initiatives, as well as provide scientific oversight and recommendations to drive CCDI’s vision and progress. He comes to NCI most recently from the US Food and Drug Administration, with a career dedicated to caring for children with cancer and decades of leadership experience improving childhood cancer research. The CCDI team isn’t the only part of CCDI that expanded. NCI released initial data from the CCDI Molecular Characterization Initiative, [...] Read more

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

June 29, 2022
Blog Posts, Community News, Guest Blogs, Research Explained No comments yet

The National Cancer Institute’s new Molecular Characterization Initiative (MCI) fosters data sharing in childhood cancer research. The program is expanding comprehensive molecular characterization of tumors to children, adolescents, and young adults (AYAs) with newly diagnosed soft tissue sarcomas 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.  This effort is in addition to the previous cohort that targeted the molecular characterization of newly diagnosed central nervous system tumors in children and AYA patients.   Participants’ tumor and blood samples are analyzed in an accredited lab, with […]

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

May 5, 2022
Blog Posts, Community News No comments yet
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

March 23, 2022
Blog Posts, Community News, Guest Blogs, Research Explained No comments yet

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

February 24, 2022
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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

February 13, 2022
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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

December 13, 2021
Webinars No comments yet
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)

August 20, 2021
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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

August 12, 2021
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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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