Assorted News from the Last Week:
Young children treated for brain tumors are less ready for school than their peers. The FDA has awarded rare pediatric disease designation and orphan drug designation to INV724 for the treatment of patients with neuroblastoma. Childhood Cancer Awareness Month is in full swing. National Cancer Institute highlighter several important streams of work relevant to our community:- MyPART coordinates the Natural History Study of Rare Solid Tumors, which has a focus on pediatric, adolescent, and young adult patients with rare solid tumors, and coordinates rare tumor clinics.
- Rare tumor clinics bring patients and families together with experts in rare tumors to the NIH Clinical Center and provide comprehensive, multidisciplinary care in an effort to learn more about these tumors and improve patients’ quality of life.
- The CCDI Molecular Characterization Initiative, a collaborative effort with the Children’s Oncology Group, enrolls children with newly diagnosed cancers and performs clinical and molecular characterization of cancers at no cost to patients.
NCI’s FY2026 Annual Plan & Professional Judgment Budget Proposal
Childhood cancer treatments increase keratinocyte carcinoma risk among survivors
Upcoming Webinars, Online Opportunities, and Meetings:
NCI will host the CCDI Webinar “Impact of the Molecular Characterization Initiative on Pediatric CNS Tumors” on September 10. This webinar will discuss the CCDI Molecular Characterization Initiative, which launched in 2022, and its progress in characterizing central nervous system tumors. Register for the virtual event here. Join MIB Agents in Making It Better through TURBO, the Tumor Review Board for Osteosarcoma (for clinicians only). Click here for more information and to register. The BrainStorm Summit for pediatric brain tumors will take place at the Mayflower Hotel September 19-21. Click here for more information and to register. The 15th Annual Congressional Childhood Cancer Summit takes place September 19th on Capitol Hill, from 9:45 AM – 12:00 PM. Register to attend here. Y’all are invited to “Cocktails for A Cause: You’re Wanted!” hosted by Gold Rush Cure on September 26. Click here for more information and to register. This year on September 30 will be the Austin Hatcher Foundation’s 15th annual Celebration of Life and Hope. Click here for more information and to register. The CureSearch annual Pediatric Early Development Symposium (PEDS) brings together key experts and stakeholders to address timely challenges and opportunities in pediatric cancer drug development on October 9 and 10. Click here for more information and to register. FDA Oncology Center of Excellence (OCE) is hosting an in-person and virtual OCE Pediatric Advocacy Forum on October 15. Click here for more information and to register.
The NCI Office of Data Sharing (ODS) is excited to be hosting the second Annual Data Sharing Symposium Driving Cancer Advances through Impactful Research, a free hybrid event open to all on October 15th and 16th on NIH’s Bethesda campus or online! Register here.
56th Congress of the International Society of Paediatric Oncology (SIOP 2024), which will take place in Honolulu, Hawaii, USA | October 17-20, 2024. Registration is open and anyone who registers before July 17, 2024 can take advantage of the discounted rates.
The Food and Drug Administration (FDA) will hold a virtual Patient Engagement Advisory Committee (the Committee) meeting on Patient-Centered Informed Consent in Clinical Study on October 30 from 10:00-5:00 ET. Click here for more information and to register .Past Recordings:
From Survivor to Advocate: Mariah Forster Olson’s Story from the Lighthouse Podcast (CAC2 Board Member and Neuroblastoma Children’s Cancer Society). Dr. Mary Frances Wedekind, was a guest on the most recent episode of NCI Cancer HealthCast podcast. She discusses NCI’s Coordinated Pediatric and Adolescent and Young Adult Rare Cancer Initiative, a national effort coordinated through NCI’s Childhood Cancer Data Initiative. She explains that the data collected through these CCDI efforts will not only help the research community learn more about childhood cancers but can serve as an external control for new clinical trials – important data needed to determine if therapies are working.Take Action:
There’s already an amazing team of volunteers ready to make a difference at CureFest 2024! However, there are still some areas where they need additional help. If you’re able to volunteer, please click on the link to see where your support is most needed: Volunteer Sign-Up. For any questions, feel free to reach out to Kristen Alexander at kristen@awoccf.org The FDA and CTTI announced the call for applications for new members of the Patient Engagement Collaborative (PEC). The PEC is an ongoing, shared forum in which the patient community (PEC members), FDA, and CTTI discuss a variety of topics such as improving communication, education, and patient engagement related to medical product regulation. NIH recently announced a Request for Information to gather community input on additional proposed actions to accelerate the career transition of postdoc scholars into thriving biomedical research careers. Please note that feedback will be accepted electronically until October 23, 2024. See the Open Mike Blog for additional information.CAC2 Innovation Council Recommendation: “Introduction to Pediatric Cancer & Mental Health” Training Course
Overview of the Opportunity: “Introduction to Pediatric Cancer & Mental Health” training course is a comprehensive program designed for providers, professionals, and support systems seeking to enhance their understanding of the intersection between pediatric cancer and mental health. CAC2 members are asked to share details about this specialized course (approved by The National Association of Social Work for 2.5 CE credits) with childhood cancer providers and professionals in their networks.
Supporting Documentation:
The course covers topics such as treatment experiences, mental health challenges, and support strategies for patients and families. CAC2 Members are eligible for a 30% discount on the $99 course price.
Informational Flyer: https://drive.google.com/file/d/1rv5W19qwn5Ey82Q2j80Sm74fHRkFOL1i/view?usp=sharing
