Assorted news from the last week:
NCI has formed a new task force that aims to address gaps in information about quality of life experienced by AYA cancer survivors. This task force will gather information directly from AYAs on how cancer and cancer treatments affect their quality of life—information known as patient-reported outcomes. A key goal of the task force is developing ways to standardize the collection of patient-reported outcomes from AYAs participating in clinical trials conducted through the NCI Community Oncology Research Program (NCORP) and NCI’s National Clinical Trials Network (NCTN).
As proposed, ARPA-H would generalize the pandemic’s lessons beyond Covid-19, creating a patient-facing engine for biomedical innovation: “My understanding of urgency comes from my son Bertrand, who died during the pandemic at age 12, not from Covid-19 but from an ultra-rare genetic disorder called NGLY1 deficiency. I spent most of his life trying to understand this previously undiscovered illness and fighting it, giving up my career as a professor in computer science to focus full time on the emerging field of precision medicine.”
Upcoming Webinars and Online Opportunities:
Pediatric nurse practitioners Missy Hansen of ICON & Lori Ranney of Children’s Minnesota will share their experiences treating adolescent & young adult populations, cancer treatment options, and the RACE (Research to Accelerate Cures & Equity) Act for Children in a 15-minute Flash webinar on August 25th at 12PM EDT.
Pediatric Brain Tumor Foundation presents Engaging in Advocacy: How to Amplify the Power of Your Story, August 26, 1:00ET. Presenters for this webinar include Sarah Milberg, Director of Government Relations and Advocacy at St. Baldrick’s Foundation, Ginny McLean, Outreach and Communications Director for the Swifty Foundation, and Rene Marsh, CNN’s government regulation and transportation correspondent.
The FDA will present a two-day workshop entitled Advancing the Development of Pediatric Therapeutics (ADEPT 7). Its main objective is to discuss opportunities for leveraging complex and innovative trial designs, understand the challenges with their applications, and develop solutions on how challenges in the designs can be overcome. The workshop will be open to the public.
CureSearch is pleased to continue the 2021 CureSearch Virtual Summit Series with the fourth session: Biorepository Form and Function on September 14, from 11:00-2:00ET. This session will provide insight into biorepositories, specifically how tissue is acquired, the types of samples and data that they house, and their accessibility. An open Q&A session will accompany the robust panel discussion.
The Ohio Department of Health has opened registration for the first annual Childhood Cancer Summit to be held ONLINE Sept 16-17. This FREE event is family-focused and includes a range of topics that are important to patients and caregivers at all stages of this experience, regardless of where you live.
Both in-person and virtual CureFest registration is now open! Make your plans for September 25-26.
- Remembering Alea Christine Ramsey – a young woman who touched many hearts.
- Global Call to Action: International Childhood Cancer Day Follow Up
- CAC2 Childhood Cancer Community News Digest (February 19-25)
- Community News–Childhood Cancer Advocates Support Successful 2024 Action Day!
- CAC2 Childhood Cancer Community News Digest (February 12-18)