CAC2 Childhood Cancer Community News Digest (February 7-13)

Assorted news from last week:

Dr. Brigitte Widemann appointed as the Special Advisor to NCI Director Ned Sharpless for childhood cancer.

When Jace Ward joined a clinical trial for a novel therapy for DIPG, he had been fighting a deadly brainstem tumor for more than a year. He told his Doctor at Stanford, Michelle Monje, “I know that I’m going to die, and I know this therapy will one day be the thing that cures other kids. Figure it out with me… I don’t want it to be a 5-year-old who has to go first.”  This is his story and the story of the clinical trial he joined.

Studies have shown that survivors of pediatric and adolescent and young adult (AYA) cancers have a higher risk of psychiatric disorders compared with individuals without cancer.  In one study, 89.2% of cancer patients aged 5 to 12 years met diagnostic criteria for at least 1 psychiatric disorder. In another study, 48% of children and adolescents with cancer met criteria for depressive disorders, anxiety disorders, or both in the 12 months after diagnosis.Researchers have also found elevated rates of psychiatric disorders in long-term survivors of pediatric and AYA cancers.

Dr. Bruce Carleton discusses the consequences of cisplatin-induced hearing loss and ongoing research efforts to eliminate this associated risk for children receiving the treatment.

Researchers have developed a new protocol for monitoring acute lymphoblastic leukemia (ALL), the most common cancer in children, to inform more effective treatment strategies and detect disease recurrence. The personalized mediator probe PCR (MP PCR) uses multiple genomic cancer cell markers in a single assay and is simpler than current techniques. It improves monitoring clonal tumor evolution to detect a relapse sooner and avoid false negative results.

Upcoming Webinars and Online Opportunities:

At 9:00 ET on Tuesday, February 15th in celebration of International Childhood Cancer Day 2022, CHOC will host a webinar to pay tribute to the medical team, healthcare workers and the multi-disciplinary team involved in the childhood cancer journey of hope.  Keynote speaker will be HRH Princess Dina Mired from Jordan – global patron for SIOP and a passionate advocate for childhood cancer.  Registration link.

Session 2 of the online course, Cancer and the Environment Forum where participants will learn about the new science on the influence of environmental chemicals on cancer, including children, will be presented from noon-2:00ET on February 16.  Registration Link.

On February 22 from 2-3pm/ET, join the Children’s Brain Tumor Network (CBTN)’s operations center team as they address questions and technical issues related accessing CBTN data and conducting research within the Gabriella Miller Kids First Data Resource Portal, CAVATICA, and PedcBioPortal.

On Friday, February 25 at 1:00 ET, just ahead of the international observance of Rare Disease Day, the NIH Common Fund-supported Gabriella Miller Kids First Data Resource Center (Kids First DRC) invites you to join  a virtual Community Open House event, to learn more about the incredible resources available to the pediatric research community.  Registration Link.

Rare Disease Day at NIH will be held virtually on Monday, Feb. 28, 2022, from 10 a.m. to 6 p.m. EST. This year’s event will feature panel discussions, rare diseases stories, virtual exhibitors and scientific posters.  Registration and Information Link.

Recordings of Recent Past Events:

• Carolyn Breinich (Survivor and Advocate)
• Dena Sherwood (Arms Wide Open Childhood Cancer Foundation)

The Role of Risk Prediction Models in Guiding Cardio-Oncology Care, hosted by Sophia’s Hope.

Take Action:

International Childhood Cancer Day is celebrated around the world on February 15th. You can use this link to participate in the virtual tree coloring https://iccd.care/en-us/home.

Childhood Cancer Prevention Day will be held on Monday, February 28.  Help share why PREVENTION MATTERS.  Access the social media toolkit here: https://www.prep4gold.org/prevention.

Kaitlin Tuinstra (), a current clinical psychology doctoral student at the Michigan School of Psychology is studying the effects of family functioning on medication adherence in pediatric cancer patients. Please contact her if you are a “parents of children (age 8-17) who have been diagnosed with any form of pediatric cancer and are actively undergoing treatment or disease maintenance” if you would consider completing “a ~20 minute online survey to share their experience of family functioning, condition management, and medication adherence. This study has been approved by the Michigan School of Psychology Institutional Review Board (study #210701).”

Parexel, a global leading contract research organization (CRO), has recently created a new Patient Advocacy Manager role to ensure that patient voice and insights are included in all aspects of clinical research.  As they build out this new role, they want to make sure they are designing it with the needs of Patient Advocacy Groups and Patient Communities in mind.  They ask that you please take a few minutes to answer the seven questions in this survey: https://www.surveymonkey.com/r/2P3FZLB? All answers are anonymous.