CC Community News Digest (March 1-13)

Assorted news from the last two weeks:

NCI commissioned the Agency for Healthcare Research and Quality (AHRQ) Technical Brief to support the development of a research agenda associated with the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act. This Technical Brief provides an overview of the existing evidence and forthcoming research relevant to disparities and barriers for pediatric cancer survivorship care, outlines open questions, and offers concrete guidance for future research in a user-friendly format.

Survivorship Care Plans are infrequently provided and not uniformly implemented, even among high-risk patients. We could do better.

New quarterly publication from Late Effects Surveillance System (LESS) study group. Incredible amount of published papers covering many different aspects of Late Effects.

CNN Reporter Andrew Kaczynski and wife, Wall Street Journal reporter Rachel Louise Ensign, opened up about their daughter Francesca, who died on Christmas Eve of brain cancer at just 9 months old, as her first birthday approaches on the View.

An international survey of pediatric cancer specialists in The Lancet Child & Adolescent Health documents multiple adverse effects of the COVID-19 pandemic on care for children and adolescents with cancer.

NCI recently announced a master plan for its $500 million Childhood Cancer Data Initiative, a pilot project designed to set the stage for building a publicly accessible, comprehensive data federation for all cancers (The Cancer Letter, Dec. 4, 2020).  Almost simultaneously, St. Jude Children’s Research Hospital, which launched its own genomic data resource for pediatric cancer in 2018, announced that it has proven that its publicly available database, called St. Jude Cloud, is capable of marshaling deep genomic data to answer specific questions in childhood cancer.

Upcoming Webinars and Online Opportunities:

ACCELERATE presents Everything you always wanted to know about Developing Drugs for Children with Cancer* (*But were afraid to ask) on March 30, noon EDT.

Newest CAC2 member Mark Levine hosts a podcast called, “Help and Hope Happen Here” (available on Apple Podcasts, Spotify, and Google Podcasts).  Access past podcasts with CAC2 Members:

• Mariah Forster Olson (Childhood cancer survivor, CAC2 Board Member, and Neuroblastoma Children’s Cancer Society)

• Peter Brown and Vicki Sardi-Brown (Mattie Miracle Cancer Foundation)

• Ginger Diamond (CAC2 Board Member and Childhood Cancer Awareness Group of Coffee County)

• Liz Scott (Alex’s Lemonade Stand Foundation)

• Mark Myers (Cure Childhood Cancer)

The Gabriella Miller Kids First Pediatric Research Program (Kids First) will host a public webinar on April 13, 2021 at 4:00 pm-6:00 pm EDT. The Kids First investigator, Dr. Elizabeth Engle of Boston Children’s Hospital​ will share findings from the Kids First’s Cranial Dysinnervation Disorders project.