CAC2 Childhood Cancer Community News Digest (November 4-10)

Live Demo: National Childhood Cancer Registry (NCCR) Data Platform, November 12, 2024, 2:00 p.m. – 3:00 PM. ET

A live hour on November 14 with dual Certified Child Life Specialist, Licensed Clinical Professional Counselor, and Author of The Dot Method, Kelsey Mora, focused on parenting strategies to improve communication, connection, and coping with children and teenagers. Click here for more information and to register.

Please attend the BORN GALA 2024, hosted by the Neev Kolte & Brave Ronil Foundation at the Blackhawk Museum in Danville, California  on November 17th, 2024.  Click here for more information and to register.

Past Recordings:

Bobbi Conner talks with Dr. Anca Dumitriu about childhood cancer survivorship in South Carolina.

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. Please email Ellyn Miller directly at , and request a template letter to send to his office.

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.

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).