Assorted News from the Last Week:
NCI’s Childhood Cancer Data Initiative has grown since its launch in 2019. Read about the initiative’s activities, successes, and priorities for the future in the most recent issue of the Journal of Clinical Oncology.
Just-released Voice of the Patient report “A Ticking Time Bomb” stems from an Externally-led Patient-Focused Drug Development (EL-PFDD) meeting on reducing cardiac late effects in pediatric cancer survivors, held in September 2022.
The National Library of Medicine (NLM) has launched the modernized ClinicalTrials.gov website, which is the result of a multi-year effort to deliver an improved user experience on an updated platform that will accommodate growth and enhance efficiency.
Older generic chemotherapy drugs remain scarce (including cisplatin and carboplatin), forcing doctors to put a priority on the patients who have the best chance of survival. (gated)
The Comprehensive Cancer Survivorship Care Act introduced. The bill sets out to improve patients’ oncology care and quality of life during active treatment and recovery by establishing standards and programs to manage a patient’s diagnosis, active treatment, and long-term follow-up care.
Upcoming Webinars, Online Opportunities, and Meetings:
Registration is open for the free AACR Virtual Patient Advocate Forum The Evolution of FDA Regulatory Science and its Impact on Cancer on Tuesday, June 27, 2023 from 1:00-2:30 p.m. ET. Learn more and register.
CCDI be demonstrating how to use the CCDI Hub and CCDI Childhood Cancer Data Catalog in a CCDI webinar on June 29 from 2:00–3:00 p.m. ET. Learn more and register.
Rocky Mountain Vintage Racing is pleased to announce a 2-year festival series culminating in 2023 with the FV 60th anniversary on July 28-30. RMVR’s Race Against Kids’ Cancer (RAKC), will be at High Plains Raceway where these wonderful cars of all years and vintages are invited to gather to celebrate this class. Click for more information about Vintage Car Races for Fundraising.
Triage Cancer Webinar: School & Cancer: Going to College: Learn about navigating college and cancer, including how to get help through accommodations, working with professors, and tips for a smooth transition from high school to college. August 24 1:00 ET. Learn more and register.
Recordings of Recent Past Events:
CAC2 member Mark Levine hosts a podcast called, “Help and Hope Happen Here” (available on Apple Podcasts, Spotify, and Google Podcasts). Access recent podcasts with CAC2 Members (and visit Help and Hope Happen Here for interviews with other CAC2 members and thought leaders from around the community):
Dana-Susan Crews (CAC2 Individual Member)
Laura Davis (CAC2 Individual Member)
Kerstin Lynam and Lauren Aufiero (CAC2 Organizational Member Pablove Foundation)
A presentation about the research on structural birth defects and childhood cancer made possible by the Kids First program, was presented by Dr. James Coulombe of NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development.
Dr. Philip Lupo of Baylor College of Medicine talked about how birth defects like congenital heart disease can increase the risk of certain types of childhood cancers.
CAC2 Member Ms. Ellyn Miller, President and Founder of the Smashing Walnuts Foundation, and Gabriella Miller’s mother, was the “Voice of the Participant” at Kids First telling her family’s story and sharing Kids First advances.
Pediatric Cancer legislation needs your support. Learn more about how to support the Gabriella Miller Kids First Research Act 2.0, the Sawyer Finn ACT, and the Give Kids a Chance Act.
Become a member of the Northwest Indiana Cancer Kids Awareness and Advocate Family. Together, we can make a difference! Join here www.nwicancerkids.org/nickmembers
Sign up to receive a copy of CAC2's free childhood cancer news digest in your inbox each week.
- CAC2 Childhood Cancer Community News Digest (September 18-24)
- CAC2 Childhood Cancer Community News Digest (September 11-17)
- CAC2 Childhood Cancer Community News Digest (September 4-10)
- CAC2 Childhood Cancer Community News Digest (August 28-September 3)
- CAC2 Childhood Cancer Community News Digest (August 21-27)