CAC2 Childhood Cancer Community News Digest (October 11-17)

Assorted news from last week:

CAC2 Ethics Think Tank will present a paper entitled Cultivating Ethically Sustainable Relationships with Stakeholders When Non-Profits Fund Pediatric Cancer Clinical Trials at SIOP 2021 (on Saturday, October 23rd).

The National Childhood Cancer Registry (NCCR) issued an update this week of frequently requested incidence statistics based on the International Classification of Childhood Cancer (ICCC) using data from . It includes number of cases, age-adjusted incidence rates, and trends by characteristics including single age at diagnosis, sex, race/ethnicity, period of diagnosis, and cancer site and subsites.  The report contains data on 232,859* tumors in children under age 20 diagnosed from 1995 to 2017 from 23 population-based cancer registries: 16 Surveillance, Epidemiology and End Result (SEER) registries and 7 National Program of Central Registries (NPCR). The NCCR data represent 66% of all U.S. children under the age 20.  Find summary data here:

New clues toward treating pediatric brain tumors harboring epigenetic mutation.

About 18% of pediatric sarcoma patients face late amputation risk decades after initial limb salvage surgery.

Upcoming Webinars and Online Opportunities:

Join the NIH Common Fund-supported Gabriella Miller Kids First Data Resource Center (Kids First DRC) for a special demonstration and Q&A session October 19, 2021 at 2:30 pm eastern time during the annual meeting of the American Society for Human Genomics (ASHG). This one-hour session will support researchers studying childhood cancers and structural birth defects. Attendees will learn how to gain to nearly 1.4 PB of clinical and molecular data to support their next research project.  Click to Register.

CAC2 will host their October All-Member webinar on October 20 at noon ET.  Panelists include CAC2 Member Kim Buff (Momcology), Heather Held (Pediatric Brain Tumor Foundation), and Robyn Dillon (Children’s Hospital of Richmond).  They will share information on their successes in connecting with children and families who can benefit from an organization’s support services.  Register for this webinar at: Finding Families to Serve.

A listening session to provide the community a forum for responding to the summary, including what may be missing or need modification, and provide input on how ARPA-H can engage effectively with stakeholders will be held on October 20, 2021, from 2:30 – 4:00 pm ET. Comments or questions may be submitted to in advance of the session.   White House Office of Science and Technology Policy & National Institutes of Health ARPA-H Listening and Feedback Session.

The National Cancer Institute (NCI) is hosting the Childhood Cancer Data Initiative (CCDI) Annual Symposium on November 9, 2021. 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 preventive measures, treatment, quality of life, and survivorship, as well as ensure that researchers learn from every child with cancer. The purpose of the symposium is to provide an update on activities to-date, and to exchange information to continue the momentum of progress from the first two years of CCDI.  Registration is required to attend the virtual meeting, complete the form under the Registration tab.

Recordings for the Childhood Cancer Prevention Initiative September Awareness Month Sessions, including several CAC2 Members:  Jonathan Agin (PREP4Gold), Anne Robertson (Toxic Free Future for Our Children), Greg Aune, and Patti and Bridget Gustafson (Swifty Foundation).

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