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

November 17, 2022
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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–The Fit for Filing Group at ACCELERATE

November 14, 2022
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Blogged with permission and thanks by the ACCELERATE Fit for Filing Working Group   The ACCELERATE PLATFORM’S Fit for Filing (FFF) group was formed in 2019 to explore the issues of academic-led trials that typically do not produce data that is fit-for-filing to gain marketing approval by regulatory agencies.   The scope of Fit for Filing (FFF) is to develop best principles on how to design and deliver an academic or academic & industry collaborative trial with a dataset that can be included in a package for regulatory filing.Objectives of the FFF working group are: Define the barriers and propose solutions to ensure […]

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Guest Blog–New FDA Draft Guidance Aims to Protect Children who Participate in Clinical Trials

November 5, 2022
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The U.S. Food and Drug Administration issued a draft guidance that, when finalized, will provide the agency’s perspective on the ethical considerations for including and protecting children in clinical trials. The draft guidance is intended to assist industry, sponsors and institutional review boards (IRBs) when considering the enrollment of children in clinical investigations of drugs, biological products and medical devices.  “Children need access to safe and effective medical products and health care professionals need data to make evidence-based decisions when treating children. However, children are a vulnerable population who can’t provide consent for themselves and are afforded additional safeguards when participating in […]

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Guest Blog–National Cancer Institute’s CCDI Molecular Characterization Initiative Adds Rare Tumors

September 12, 2022
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Children, adolescents, and young adults (AYAs) with newly diagnosed rare tumors are now eligible to enroll in the CCDI Molecular Characterization Initiative. Rare tumors are childhood cancers that have a low number of patients, which have been hard to study and understand. Potential participants must also be receiving care from a Children’s Oncology Group-affiliated hospital. Enrollment is still also open to children and AYAs with central nervous system tumors and soft tissue sarcomas. The initiative will continue to expand to children and AYAs outside of Children’s Oncology Group–affiliated hospitals, those with other childhood cancers, and those whose cancer has returned. […]

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Guest Blog–National Cancer Institute Launches the CCDI Molecular Targets Platform

August 10, 2022
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The Molecular Targets Platform is an NCI-supported instance of the  Open Targets Platform with a focus on preclinical pediatric oncology data. It is a tool that supports the identification and prioritization of molecular targets expressed in childhood cancers.   The Molecular Targets Platform builds upon the data and functionality of the Open Targets Platform while also including: The FDA Pediatric Molecular Target Lists (FDA PMTL) Analyses of pediatric oncology datasets from the Open Pediatric Cancer (OpenPedCan) project at the Children’s Hospital of Philadelphia: Therapeutically Applicable Research to Generate Effective Treatments (TARGET) Open Pediatric Brain Tumor Atlas (OpenPBTA) Gabriella Miller Kids […]

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Community News–Update on Federal Childhood Cancer Appropriations Process

August 1, 2022
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Update from our colleagues at the Alliance for Childhood Cancer (July 28, 2022): The Senate Appropriations Committee included language to fund the Childhood Cancer STAR Act and the Childhood Cancer Data Initiative fully again this year in its Fiscal Year 2023 Labor-HHS Appropriations bill.  In addition, the FY23 Defense Appropriations bill included many topics related to childhood and AYA cancer research and maintained level funding at $130 million for the Peer Reviewed Cancer Research Program. This step is important to our requests being included in the final appropriations package when Congress considers the next budget. Here are some key sections [...] Read more

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

June 29, 2022
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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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Survivorship Matters Blog: Recapturing the Dream

June 29, 2022
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Survivorship Matters Blog By CAC2 Member Mary Beth Collins, PREP4Gold During his teens, my neuroblastoma survivor Joshua was struggling in every way a person could struggle. Puberty had brought on new long term side effects, and reinvigorated old ones that we thought were behind us. His chemo-induced hearing loss progressed from moderate-to-severe to profound, and his hearing aides became a trigger for his migraines. The combinations of cognitive impact, cluster migraines, and chemo-induced ADHD made education almost impossible. He was doing the best he could on home/hospital care with a teacher who visited the house a few times a week. […]

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

May 5, 2022
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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

CAC2 News–Great.com Interviews Coalition Against Childhood Cancer About A Future Without Childhood Cancers

May 2, 2022
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Danielle Riberio from Great.com interviewed Coalition Against Childhood Cancer as part of their ‘Great.com Talks With…’ podcast. This series is an antidote to negative news stories that aims to shed light on organizations and experts whose work is making a positive impact on the world. Families affected by childhood cancer face untold challenges. From having to sacrifice work to paying huge medical bills, only a small number of families can afford to make these sacrifices. For the vast majority that cannot, life can be extremely difficult for both patient and family members. In this episode, Danielle talked with Vickie Buenger, […]

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