CAC2 Childhood Cancer Community News Digest (February 12-18)

Assorted News from the Last Week:

A Belgian boy with DIPG has lived seven years after his diagnosis and now at 13 years old, there is no trace of the tumor left.  He was enrolled in the BIOMEDE trial, and from the start responded strongly to the cancer drug everolimus.

CAC2 Blog post: A Tribute to Pediatric Cancer Caregivers: Honoring Heroes

Research demonstrates the feasibility of linking central cancer registry and pediatric cancer clinical trial consortium data to track patients and describe gaps in clinical trial enrollment.

St. Jude Children’s Research Hospital has introduced a simple tool in Latin America called a pediatric early warning system (PEWS) that identifies children who are suffering from severe treatment-related complications and guides the clinical team through the next steps for care.

Children with cancer receiving chemotherapy may experience negative eating behaviors, including alterations in taste, emotional overeating or undereating, food selectivity, and slow eating.

Opinion Piece: Canada’s assisted dying regime should not be expanded to include children, even mature minors.

Researchers at Children’s Hospital Los Angeles have unveiled a revolutionary assay capable of efficiently and accurately identifying clinically relevant gene fusions in pediatric tumors.

Oncodaily presented its first-ever global Oncothon, a 24-hour worldwide telethon aimed at raising funds for cancer last week on International Childhood Cancer Awareness Day.

CAC2 Member Juanita Prada believes data sharing can lead to a deeper understanding of the late effects of childhood cancer treatment and enhance support for those navigating challenges in their post-cancer lives.


Upcoming Webinars, Online Opportunities, and Meetings:


The Pediatric Low-Grade Glioma Externally-Led Patient-Focused Drug Development Meeting is an important opportunity for pediatric low-grade glioma patients, survivors, their families, and caregivers to speak directly to the FDA, pharmaceutical companies, and public about their current and past experiences with pLGG and the impact the disease has had on their daily lives. Friday, February 23 from 10:00-3:00 ET.  For information and to register.

Healing Hearts was created by grieving parents who needed a haven of love and comfort along with the hope of healing. Together, we support each other in creating a life worth living, for and with our children. Healing Hearts is for Osteosarcoma Bereaved families only and meets once a month on Wednesdays from 7- 8PM ET on the following dates:  February 28, March 27, and April 24.  For information and to register.

NCI is hosting a webinar on February 26 at 2:00 ET featuring Dr. Michael Watkins, Brian Furner, and Dr. Sam Volchenboum from Data for the Common Good (D4CG) at the University of Chicago, home of the Pediatric Cancer Data Commons.  These experts will discuss pediatric cancer data standards in addition to D4CG’s contribution to the upcoming Childhood Cancer Clinical Data Commons. This CCDI resource will allow researchers to access harmonized and standardized participant-level demographics and clinical data collected from multiple studies.  For information and to register.

FDA’s Rare Disease Day will be on Friday, March 1, 2024, and registration is open for this virtual event. This year’s Rare Disease Day is dedicated to patients and health care professionals.

The United States Patent and Trademark Office (USPTO) is hosting a series of Public Engagement Partnership meetings with the first one on March 1 from 1:00-5:00 pm ET. USPTO wants to connect with individuals, advocacy groups, public interest focused nonprofits, and academics in order to exchange ideas, experiences, and insights related to patent policies and procedures.

The 21st International Symposium on Pediatric Neuro-Oncology (ISPNO 2024) from June 29 – July 2, 2024, and the Annual Meeting of the Brain Tumor Group of SIOP Europe (SIOPE-BTG) from June 28-29, 2024, which will take place in Philadelphia, PA.  For information and to register.

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.

Take Action:

Help spread the word about the CAC2 Survivorship Toolkit using the CAC2 Survivorship Toolkit Promotions Kit. It contains a sample newsletter article, an email template, and a short introduction that can be used on a website.

The Childhood Cancer Data Initiative (CCDI) is seeking input to assist NCI in using electronic health record (EHR) data to accelerate progress in childhood cancer research. You are invited to respond to our latest Request for Information (RFI) to share your capabilities in automated EHR data entry and extraction. Submissions will be accepted until February 29, 2024.  Submit a response to share your tools, clinical workflows, and approaches for entering and extracting EHR data in a structured format. You may also respond with insights on how existing tools for data capturing, extraction, and transformation in adult cancer research can be used to support childhood and rare cancer research. Feel free to reach out to Subhashini Jagu with questions.


Sign up to receive a copy of CAC2's free childhood cancer news digest in your inbox each week.

This field is for validation purposes and should be left unchanged.