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

November 18, 2024 Community News, News Digest

Assorted News from the Last Week:

Electronic symptom screening in kids with cancer boosts quality of care.

DIPG Research in Nature: brain tumor yields, in some young people, to CAR-T therapy. Plus a profile on Dr. Michelle Manje’s approach to DIPG research (gated)

Member blog post by Student Member Joshua Omale: “Reflections from International Cancer Week 2024”

The NCCR Data Platform is the nation’s first data-sharing resource to link childhood, adolescent, and young adult records across population-based cancer registries and real-world data partners. The Data Platform links social drivers of health, pharmacy claims, and medical claims data, as well as data from organizations like the Children’s Oncology Group (and even more data sources that will be added in the future).

More than 40% of adults and half of children with Neurofibromatosis Type 1 had durable responses with MEK Inhibitor as part of treatment.

One-third of childhood cancer survivors fear recurrence as adults.

American Cancer Society finds that 17 out of 34 cancer types were increasing among younger people and part of the solution is to develop more efficient, targeted tests that can detect cancers earlier on.

Three cycles of chemotherapy showed similar efficacy to six cycles in preventing metastasis and death in high-risk retinoblastoma and reported fewer side effects and a lesser decline in quality of life in the three-cycle group compared to the six-cycle group.

In a randomized clinical trial, among pediatric patients with cancer admitted to a hospital or seen in a clinic daily for at least 5 days, symptom screening with SSPedi improved total symptom scores compared to usual care.

The FDA granted a rare pediatric disease designation to elraglusib (9-ING-41), a novel GSK-3β inhibitor, as a potential therapeutic option for patients with Ewing sarcoma.

Upcoming Webinars, Online Opportunities, and Meetings:

Join in this December 5th for the first-ever International Neuroblastoma Awareness Day! Together, we’ll shine a global spotlight on this rare and aggressive childhood cancer, uniting researchers, advocates, and families from around the world. Click here for more information.

In honor of National Grief Awareness Week during the first week of December, SAMHSA is hosting two informational webinars with experts in the field of bereavement: the second one is “What to do with the Wounds that Time Does Not Heal?” on December 6 at 1:00 pm ET.  For more information and to register.

Take Action:

If you or someone you know resides in Kentucky, please contact Senator Rand Paul’s office to support H.R. 3391/S. 1624 – The Gabriella Miller Kids First Research Act 2.0 a crucial program that supports research into childhood cancer and structural birth defects. Watch the two minute tutorial video to see how easy it is to do. Then click on the bottom link to complete the letter. The goal is to have 500 emails sent to each of these senators offices between now and Thanksgiving.  After watching the video, click this link below to send the email: https://rebrand.ly/jnpp25v.

Earlier this year Accelerating Kids’s Access to Care Act (H.R. 4758/S. 2372) passed unanimously in the U.S. House of Representatives and currently has 42 co-sponsors in the Senate.   Add your organization’s name to an end-of-year communication to Congressional leadership asking that the bill be signed into law in the end-of-year bill package by 5:00 pm on Friday, November 15, 2024:  use this Google form to add your organization.

Please read this letter addressed to the director of the National Cancer Institute (NCI) from the childhood cancer patient community and contact Gavin Lindberg () of the EVAN Foundations if you would like to sign on to it.  The letter hopes to a) raise the NCI director’s awareness of the pediatric community’s disappointment with a recent decision by the NCI regarding funding of childhood cancer CAR-T cell clinical trials, and b)  Ask the director to prioritize funding an additional CAR-T clinical trial in pediatrics moving forward.

CAC2 Innovation Council Recommendation: Research Opportunity for Caregivers of Children or AYA Patients with Cancer Diagnoses 

 

Overview of the Opportunity:  This is a request from the NIH Intramural Research Program for us to share information about and invite participation in a study that seeks to identify caregiver-reported and AYA-reported barriers to and facilitators of clinical trial/research study enrollment and participation.

Supporting Documentation: Studies show that child and adolescent participation in clinical trials is associated with improved cancer survival outcomes. However, there are significant racial, ethnic, and socioeconomic disparities in pediatric clinical trial enrollment. Additionally, adolescents are the least likely age group to enroll in clinical trials.

The research team hopes that by better understanding the experiences of caregivers and AYAs specifically around decision-making in regard to clinical trial participation, they can identify facilitators and modifiable barriers and implement initiatives to reduce those barriers and make clinical trials and lifesaving care more accessible to all youth with cancer.

Participation in this study involves responding to a composite survey online that takes 20 minutes to complete. The composite survey is anonymous, does not collect any personal identifiable information, and is available in English and Spanish. All participants are provided with Findhelp and Crisis Text Line as resources to help address any identified unmet needs; participants are also encouraged to communicate with their medical team about any unmet needs. This study has been approved by the NIH IRB as IRB exempt given it is an anonymous, low-risk survey that is not collecting protected health information or sensitive personally identifiable information).

The direct link to the survey is included here (https://www.surveymonkey.com/r/RKB953R).

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