CAC2 Childhood Cancer Community News Digest (October 17-23)

October 24, 2022 Community News, News Digest

Assorted News from the Last Week:

Nearly one in four families of pediatric patients with acute lymphoblastic leukemia (ALL) enrolled in a clinical trial experienced food insecurity, and almost half of the families eligible for the Supplemental Nutrition Assistance Program (SNAP) did not receive benefits. In addition, receiving SNAP benefits was not sufficient to address food insecurity.

Patients who undergo radiotherapy for the treatment of childhood cancer have an increased risk of developing meningioma later in life, and that risk may persist for 30 years, according to a case-control study published in JAMA Oncology.

The incidence of invasive breast cancer among childhood cancer survivors (CCSs) decreased from the 1970s to the 1990s, according to a study published in JAMA Oncology. This decrease was likely driven by a reduction in the use of chest radiation to treat pediatric cancer but was attenuated by an increase in the use of anthracycline treatment

Upcoming Webinars, Online Opportunities, and Meetings:

The National Cancer Institute Childhood Cancer Data Initiative (CCDI) will host a virtual workshop on November 2, 10:00-3:00 ET that will bring together a variety of stakeholders and leaders with a breadth of scientific and technical expertise to gain common understanding of the current issues and opportunities related to electronic health record (EHR) extraction in childhood cancer research. These insights will help drive future CCDI EHR activities.  Details and Registration Link

Please plan to join Focused Ultrasound either in person or virtually in October 23-27 2022 for the world’s leading forum for sharing the latest translational and clinical advances in focused ultrasound.  Details

Triage Cancer webinar: Understanding Long-Term Disability Insurance Webinar, November 10 at 1:00pm ET. This webinar on Understanding Long-Term Disability Insurance will provide information on making a long-term disability insurance claim. The webinar will also address steps that employees can take while still working but considering taking time off, tips for submitting a long-term disability claim, how short-term and long-term disability interact, and what to do if a claim is denied.  Details and Registration Link

Recordings of Recent Past Events:

United Therapeutics sponsored an open conversation with patients, parents, and an expert mental health clinician dealing with emotions, learning to be vulnerable, finding the strength to fight, figuring out how to cope together, and much more.

NCI recently hosted a webinar offering a comprehensive update on implementation activities related to the research provisions in the Childhood Cancer STAR Act, which included updates on biospecimen collection and biobanking activities and on survivorship research and reporting activities.  Watch the recording.

Academic trials are not usually part of the marketing authorisation process of a new drug. But why is that? Let’s explore how we can open up this opportunity to enable collaborative trials to deliver data that are fit for filing.

Take Action:

Please provide comments in response to the PFDD (Patient-Focused Drug Development ) meeting on Reducing Cardiac Late Effects in Pediatric Cancer Survivors that was held last month.

My DIPGNavigator is hiring a Nurse Navigator (NN) who will provide one-on-one support (via virtual chats, phone calls, texts, email, etc.) to families navigating a DIPG/DMG diagnosis, with an emphasis on educating and connecting the family to appropriate medical experts. In addition to supporting the family through education and connection, the NN will direct the family to other resources the family may need during their DIPG/DMG journey (e.g., financial assistance, tumor donation resources, etc.).  Click for More Information

The Communication Team at the Childhood Cancer Data Initiative is hoping to identify personal stories from the patient/caregiver/survivor perspective to feature in their monthly newsletter debuting next month.  Each month the CCDI progress update will include three stories of people in the childhood cancer community that either relate directly to childhood cancer data sharing or allow them to highlight a need that CCDI would help meet.  Please email Vickie at of you have a story or would like more information.

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