CAC2 Childhood Cancer Community News Digest (February 5-11)

Assorted News from the Last Week:

The National Comprehensive Cancer Network® (NCCN®) published its first ever set of treatment recommendations pertaining to neuroblastoma.

Replacing brentuximab vedotin with nivolumab in first-line treatment combined with the chemotherapy regimen AVD improved progression-free survival in pediatric patients with newly diagnosed, advanced-stage classic Hodgkin lymphoma (cHL).

Study results confirm that RNA sequencing analysis (RNA-Seq) workflow for clinical diagnosis of molecular subtypes in pediatric B-acute lymphoblastic leukemia (B-ALL) is a feasible method.

A new rapid, cost-effective, and accurate ATRT subgrouping assay applicable for clinical use is presented.

CAC2 Member ASK Childhood Cancer Foundation helps local 9-year-old cope with cancer, keep up with schoolwork.

From CAC2 Member Katie Holcomb (Ryan’s Case for Smiles) “What to Say to Parents of a Child With Cancer Or Other Serious Illness

Upcoming Webinars, Online Opportunities, and Meetings:


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.

Alliance for Childhood Cancer has announce that Action Days 2024 will take place in Washington, DC from February 13-14, 2024. Registration will open in mid-December.  Click for information.

In honor of International Childhood Cancer Day, OncoDaily, a specialized oncology media outlet, will host a global telethon on February 15th.  For information and to register. 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.

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.

Past Recordings:

Mettle Health offers a free library of webinars that address different aspects of mental health for those coping with serious illness, disability, and end of life.  Learn more.

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.

Join RESOLVE and the Minnesota Building Families Coalition for an in-person Minnesota Advocacy Day, February 14! No prior experience necessary. At this FREE event, you will play a key role in advancing the Minnesota Building Families Act.  For information and to register.

Join us in celebrating the successful collaboration between CAC2 Members Oncoheroes Biosciences and Arms Wide Open Childhood Cancer Foundation, who are working together in honor of International Childhood Cancer Day to sponsor Oncothon. Click for more information.

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.


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