- hope4atrt
- Apr 17
- 2 min read
We know that navigating a diagnosis like ATRT comes with a lot of questions. One of the most powerful ways families can help drive progress and gain expert insight is by joining the PNOC030 ATRT Registry.
What is it? The registry is a specialized study designed to collect data, imaging, and (optional) samples from children with ATRT. It helps the world’s leading researchers at PNOC (Pacific Pediatric Neuro-Oncology Consortium) better understand the molecular subgroups of this disease.
Why is it important?
Data is the key to a cure, but joining also provides an incredible resource for your family:
Driving Progress: Your child’s journey contributes to a global database that helps doctors find more effective, less toxic treatments. It’s a way to ensure every warrior’s story helps light the path for the next.
Expert Review: By participating, your family gains access to PNOC’s ATRT Tumor Board, where a panel of world-class specialists can review your child’s case and provide treatment recommendations.
How do I join?
Check Your Site: Visit pnoc.us/pnoc030 to see if your hospital is a PNOC institution.
If YES: Email info@pnoc.us
If NO: Email atrt@chla.usc.edu
Confirm the Details: In your email, mention where your child is being treated and if you have a pathology report with a molecular subgroup listed (MYC, TYR, or SHH).
Connect with the Team: You’ll schedule a quick consent conference with the program manager to review the documents and choose your options for sample sharing and tumor board review.
Let them do the heavy lifting: Once you’ve consented, the team coordinates with your hospital to collect medical records and imaging.
Your participation fuels the search for a cure.
