CC Community News Digest (week of September 21-27)

Assorted news from the last week:

In a Swedish study of how families in pediatric oncology experienced illness‐related information and communication with professionals and within the family, eighty‐six percent of the parents and 71% of the siblings reported that they had not received enough or any information about how the cancer and its treatment could affect the child’s psychological health.

EMA has published the final version of ‘Preparedness of medicines’ clinical trials in paediatrics – recommendations by the Enpr-EMA working group on trial preparedness.’  Key takeaways:  The definition of “trial preparedness” has been extended and a new term “trial feasibility” has been added, and the scope of the paper has been reduced and no longer covers activities relevant to the development of age-appropriate formulations.

Some CAC2 Members have spent months working on the Childhood Cancer Prevention Initiatives with a wider community of folks dedicated to working on childhood cancer prevention.  You can download and read the Report released this week and you can watch the presentation on Preventing Non-Heredity Childhood Cancer.

With only three weeks left before SIOP 2020 Virtual Congress, SIOP 2019 Webcasts are now available online for free.

In collaboration with the TpAML investigators, led by Dr. Soheil Meshinchi at Fred Hutch, Accenture data scientists aggregated and standardized anonymized genomic and clinical data from over 2,000 children with AML, treated in clinical trials.

Oncoheroes Biosciences, a biotech focused on advancing new therapies for childhood cancer and founded by CAC2 Members Ricardo Garcia (Richi Foundation) and Cesare Spadoni (aPODD), announce that the United States Food and Drug Administration (FDA) has granted the designation of rare pediatric disease to volasertib, an investigational treatment for rhabdomyosarcoma.

Upcoming webinars:

Nonprofit Tech for Good will host a free webinar Tuesday, September 29, 2020 at 1:00 ET to provide tips, strategies, and templates to help foundation gain and retain donors this year on Giving Tuesday and Welcome Wednesday.

The Society for Neuro-Oncology and the Pediatric Brain Tumor Foundation are pleased to announce a virtual discussion on the Impact of COVID-19 on Pediatric Brain Tumor Research and Treatment on September 30 at noon ET. Registration is free and limited to the first 1,000 participants.

CureSearch Early Development Symposium convenes virtually on October 1-2 (Registration required and is free for non-profits).  This practical workshop will focus on initial Pediatric Study Plan (iPSP) and Paediatric Investigation Plan (PIP) development and implementation in today’s rapidly changing pediatric cancer landscape.

The AACR Virtual Patient Advocate Forum: COVID-19 and Cancer will take place on Thursday, October 1, 2020 (1:00 – 3:30 pm ET) and will discuss the impact of COVID-19 on patients with cancer, vaccines and therapies in development for COVID-19, and provide an update on the state of COVID-19 science.  Learn more about the meeting program and register today.

Digital Science will host “Funders Innovating and Collaborating on Global Challenges” on October 2nd at 11:30AM ET (register here).  The presentation will speakers from International Cancer Research Partnership (ICRP), Health Research Alliance (HRA), International Alliance of Mental Health Research Funders (IAMHRF), and Howard Hughes Medical Institute’s Janelia Research Campus, and cover topics such as  funder collaboration, utilizing landscape analysis to make strategic decisions, and open data.

The Gabriella Miller Kids First Pediatric Research Program’s will host a webinar on October 6 at 2:00 ET, to share findings from the Kids First study on novel cancer susceptibility mutations in families and demonstrate new features of the Gabriella Miller Kids First Data Resource Portal.


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