CAC2 Childhood Cancer Community News Digest (October 10-16)

October 17, 2022 Community News, News Digest

Assorted News from the Last Week:

Pedmark (sodium thiosulfate) is now available to reduce the risk of ototoxicity associated with cisplatin in pediatric patients 1 month of age and older with localized, nonmetastatic solid tumors.

Pediatric patients with cancer and those who have undergone hematopoietic stem cell transplant (HSCT) may develop long-term effects, including fatigue. However, fatigue is not associated with treatment intensity or therapy type, according to findings published in the Journal of Child Health Care.

Real-world costs for care for commercially insured U.S. pediatric patients with acute lymphoblastic leukemia (ALL) were higher in those diagnosed at age 10 or older and have increased substantially overall over time.

The Broad Institute of MIT and Harvard, Dana-Farber Cancer Institute, and St. Jude Children’s Research Hospital announced the largest academic collaboration of its kind to transform and accelerate the identification of vulnerabilities in pediatric cancers and translate them into better treatments.

Upcoming Webinars, Online Opportunities, and Meetings:

Join The Leukemia & Lymphoma Society on Wednesday October 19 for a childhood cancer community virtual Day of Action! Interested organizations will be participating in a flurry of activities urging congress to pass both the Childhood Cancer STAR Reauthorization Act and the Accelerating Kids’ Access to Care Act(AKACA) into law before the end of the year.  Contact Matt Marks () for details.

First International Pediatric Cardio-Oncology Conference, October 21 and 22.  Details and Registration Link.

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.

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.

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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