CAC2 Childhood Cancer Community News Digest (September 23-29)

Assorted News from the Last Week:

The rare pediatric disease PRV program to incentivize drug development for rare pediatric diseases (originally the Creating Hope Act) was extended past its sunset date (September 30) to December 20, 2024.  While the US House has reauthorized it through 2029, the Senate must do so before the end of the Congress for it to remain in effect after Decembermber.

In a bold step toward addressing the stark disparities in pediatric cancer care, Dana-Farber Cancer Institute is taking the lead in launching IGNITE—the first national, pediatric hematology-oncology health equity research consortium.

Experts have developed a breakthrough small-molecule drug, a ‘protein degrader’ for hard-to-treat cancers.

Clinical trial results show low-intensity therapy can achieve positive outcomes for certain pediatric leukemia subtypes.

The next-generation alkylating agent LP-184 has received 3 rare pediatric disease designations (RPDD) from the FDA as potential treatment options for patients with malignant rhabdoid tumors (MRT), rhabdomyosarcoma (RMS), and hepatoblastoma.

A large study suggests that pediatric cancer patients are more likely to die in the hospital than at home.

My Friend Is the Pediatric Cancer Whisperer. This Summer I Needed Her.

Upcoming Webinars, Online Opportunities, and Meetings:

This year on September 30 will be the Austin Hatcher Foundation’s 15th annual Celebration of Life and Hope.  Click here for more information and to register.

The CureSearch annual Pediatric Early Development Symposium (PEDS) brings together key experts and stakeholders to address timely challenges and opportunities in pediatric cancer drug development on October 9 and 10.  Click here for more information and to register.

FDA Oncology Center of Excellence (OCE) is hosting an in-person and virtual OCE Pediatric Advocacy Forum on October 15.  Click here for more information and to register.

The NCI Office of Data Sharing (ODS) is excited to be hosting the second Annual Data Sharing Symposium Driving Cancer Advances through Impactful Research, a free hybrid event open to all on October 15th and 16th on NIH’s Bethesda campus or online! Register here.

56th Congress of the International Society of Paediatric Oncology (SIOP 2024), which will take place in Honolulu, Hawaii, USA | October 17-20, 2024. Registration is open and anyone who registers before July 17, 2024 can take advantage of the discounted rates.

The Food and Drug Administration (FDA) will hold a virtual Patient Engagement Advisory Committee (the Committee) meeting on Patient-Centered Informed Consent in Clinical Study on October 30 from 10:00-5:00 ET.  Click here for more information and to register .

Machine learning in paediatric haematological malignancies: a systematic review of prognosis, toxicity and treatment response models.

Past Recordings:

CAC2 Member Sandy Barker (Gold Rush Cure) interviewed CAC2 President Emeritus Vickie Buenger in Season 2, Episode 4 of RUSH Podcast.  The conversation focuses on the intersection of policy-making and advocacy in the fight against cancers in children.

Saro H. Armenian, DO, MPH, discusses treatment advancements that have helped reduce long-term adverse effects for patients in pediatric oncology.

Take Action:

Visit the recently launched Childhood Cancer Hub, a comprehensive directory of resources for childhood cancer patients and their families. Please share with your network to help our families in need at every phase of their journey.  childhoodcancerhub.org

NIH recently announced a Request for Information to gather community input on additional proposed actions to accelerate the career transition of postdoc scholars into thriving biomedical research careers. Please note that feedback will be accepted electronically until October 23, 2024.  See the Open Mike Blog for additional information.

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