Assorted News from the Last Week:
The FDA has approved brentuximab vedotin (Adcetris) in combination with doxorubicin, vincristine, etoposide, prednisone, and cyclophosphamide (AVE-PC) in pediatric patients aged 2 years and older with previously untreated, high-risk classical Hodgkin lymphoma. Read more: Administration of a targeted therapy for children with high-risk Hodgkin lymphoma (HL) was found to significantly decrease relapse rates in a large multicenter clinical trial conducted by the Children’s Oncology Group (COG) and published in The New England Journal of Medicine.
Researchers have used CRISPR/Cas9 technology to engineer donor T cells to try to treat seriously ill children with resistant leukemia, who had otherwise exhausted all available therapies.
Families who lose a child to brain cancer, want doctors to give them the option to donate their child’s tissue. Donating tissue not only contributes to research for a cure, but donating helps families grieve and see something good come from their tragic loss.
Researchers discovered that by blocking the production of an enzyme called DHODH, they were able to halt the growth of MYC gene-amplified medulloblastoma in mouse models, the most aggressive subtype of this cancer.
Tweeting through uncertainty: Candid’s approach to nonprofit Twitter
Upcoming Webinars, Online Opportunities, and Meetings:
NCI will host “Toward equity in cancer pain management for pediatric, adolescent, and young adult populations” on November 17, from 1:00-3:00 pm ET. Two clinical experts, a research advocate, and a discussant will address challenges in the assessment and management of pain in pediatric, adolescent, and young adult cancer survivors. Speakers will summarize the critical role of patient-parent-clinician collaboration in improving pain outcomes. Speakers will also highlight the importance of strengthening interdisciplinary global capacity to better address pain in pediatric, adolescent, and young adult palliative care settings, and summarize knowledge gaps that should be addressed through additional research. Details and Registration Link
The National Cancer Institute Childhood Cancer Data Initiative (CCDI) will host a virtual workshop on November 18, 10:00-3:30 ET. The topic is Advancing a National Initiative for Rare Cancers in Children, Adolescents, and Young Adults. Details and Registration Link
Recordings of Recent Past Events:
The ACCELERATE Fit for Filing Working Group developed an education programme in 2022 to disseminate the guidelines and support investigators and academic sponsors and industry collaborators to understand the needs for “fit for filing“ trials. Two of the three webinars are available for viewing (click webinar titles below to view):
- Should and could my trial be fit for filing
- A spoonful of data helps the medicine go down: Purposeful collection of clean and reproducible trial data
- With great trial needs comes great responsibilities: Delivering high quality data and successfully file an application (forthcoming)
Take Action:
The CAC2 Survivorship Team is building a comprehensive six category Childhood Cancer Survivorship Toolkit to provide info & resources to help survivors/families. If you have explored resources for your family, or to assist others, THEY NEED YOUR HELP! This week please consider contributing information related to transitioning to adulthood. The goal is to provide a comprehensive resource that provides meaningful information and resources for survivors and their families, throughout the lifespan. Its time to provide survivors & their families the support they deserve. 
https://www.surveymonkey.com/r/F9MBQWZ
The NCI-Cancer Research UK Cancer Grand Challenges initiative brings together international research teams to tackle cancer’s toughest challenges. The first round of challenges funded through this partnership were announced in June 2022, with four teams receiving awards totaling $100 million over 5 years. NCI and Cancer Research UK are now preparing for the next round of challenge opportunities, and we need your ideas – submit them online now through November 28, 2022. For those looking for input on what to submit, the web portal provides additional guidance for developing suitable ideas for consideration.
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.
Help make DIPG and childhood cancer history with floor-vote scheduled for H. Res. 404, the DIPG Awareness Resolution!
Here’s all the info on it: https://dipgadvocacy.org/help-us-make-childhood-cancer…/ Quick link to the sign-on form:
Applications are now open for the brand new ALADDIN educational programme! Are you a patient advocate interested in paediatric drug development? Apply today and train in regulatory science for childhood cancer drug development:https://aladdin-education.eu/training-course/