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CAC2 Childhood Cancer Community News Digest (September 19-25)

September 25, 2022
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Assorted News from the Last Week: The FDA has approved sodium thiosulfate (Pedmark) to reduce the risk of ototoxicity associated with cisplatin in pediatric patients aged 1 month and older with localized, nonmetastatic solid tumors. The White House announced its support for the Childhood Cancer STAR Reauthorization Act. Answers to common questions about COVID-19 vaccines in children with cancer Cancer in kids tied to prenatal exposure to high-dose folic acid and seizure meds, but no link seen among children of mothers without epilepsy. Scientists have found that group 3 and 4 medulloblastoma arise from the rhombic lip, knowledge that may […]

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CAC2 Childhood Cancer Community News Digest (September 12-18)

September 20, 2022
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Assorted News from the Last Week: Supporting Children and Families Through a Cancer Diagnosis by Child Life Specialist Nicolle Bengtson. Nearly 20 years since her initial diagnosis, CAC2 Member Juanita Prada now works with children who are fighting cancer just like she did. Day One Biopharmaceuticals emerged in May to develop new drugs specifically for children with cancer. Now, as it ramps up its work, the company is making a flurry of new hires and new board appointments, including a new CEO: Jeremy Bender, Ph.D., who previously led corporate development at Gilead Sciences. Challenges burden pediatric oncologists following the peak […]

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CAC2 Childhood Cancer Community News Digest (August 29-September 11)

September 12, 2022
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Assorted News from the Last Two Weeks: National Cancer Institute’s CCDI Molecular Characterization Initiative adds rare tumors. Study provides first in-depth look at major mix-ups in the genomic terrain of pediatric high-grade gliomas. LLS is working to change the pediatric clinical trial model. The aftermath of childhood cancer:  2000 days without Ana Biden appoints former government scientist as first leader of ARPA-H. The use of tisagenlecleucel (Kymriah) in children younger than 3 years of age with relapsed or refractory B-cell acute lymphoblastic leukemia (ALL) was as effective, and safe, in a retrospective cohort study as it was previously seen to […]

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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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