For years, pediatric brain tumor research has largely relied on snapshots. A tissue sample collected during surgery. A scan captured at diagnosis. Molecular data tied to a single moment in time.
But tumors change.
As pediatric brain tumors respond to treatment, recur, or progress, their biology changes over time, yet those shifts are difficult to fully capture through traditional datasets alone. The new CBTN Curated | GFAC Post-Mortem helps close that gap by giving researchers a longitudinal view of pediatric brain tumors across the full disease journey, from diagnosis through post-mortem analysis. This is important because access to tumor tissue is often only obtainable after a child passes.
Developed through a collaboration between the Children’s Brain Tumor Network (CBTN) and Gift from a Child (GFAC), this research-ready resource reflects the essential role GFAC plays in making post-mortem tissue donation possible for families who choose to contribute to research. Through this partnership, GFAC helps expand access to rare, invaluable specimens, while CBTN harmonizes and integrates those specimens with clinical data, MRI imaging, and multiomic data into a standardized dataset that researchers can use to study tumor progression over time.
The initial release planned for June 2026 is expected to include 150 patients and identify linked research models, including cell lines (tumor cells that can continue growing in a lab for ongoing study) and organoids (miniature lab-grown models that closely mimic a tumor) derived from tumor tissue, where available.
“The most powerful aspect is seeing how the tumor changes over time,” said CBTN Research Lab Director Mateusz Koptyra. “Whether the tumor at diagnosis is truly the same tumor at end-stage disease, probably not. Tumors adapt to therapy and treatment. This allows us to study what drives that evolution.”
Tracking How Tumors Change Over Time
Supported by Swifty Foundation, the force behind the Gift from a Child post-mortem collection and donation process, the CBTN Curated | GFAC Post Mortem allows researchers to study disease progression across a patient’s full journey rather than relying on isolated moments from surgery or recurrence. By connecting molecular data with treatment history, imaging, and clinical context at the patient level, researchers can begin asking new questions about how tumors evolve under the effects of therapy over time.
That includes studying changes linked to treatment resistance, identifying tumor cell populations that grow more dominant as disease progresses, tracking changes in gene activity, and exploring imaging patterns connected to progression.
Previous longitudinal studies have already shown that tumors can change substantially between diagnosis and end-stage disease. Some features that become important later in the disease may be nearly impossible to detect at diagnosis.
“The long-term goal is to better anticipate how tumors may respond to treatment over time, rather than reacting only to the disease as it appears in the moment,” Koptyra said.
The resource is also designed to support future therapy research. Linked biospecimens and associated tumoroid or cell line models may help researchers study therapeutic response and drug testing in systems connected back to real patient progression data.
Building a More Complete Research Resource
Historically, post-mortem tissue has raised questions about molecular quality and research reliability. According to Koptyra, this effort places strong emphasis on quality control, harmonization, and transparency.
Samples included in the CBTN Curated | GFAC Post-Mortem undergo standardized collection workflows, quality assessment, and harmonization processes before inclusion. Quality metrics and collection timelines are tracked within CBTN infrastructure to provide researchers with transparency around tissue integrity and usability.
At the same time, this tissue provides scientific insights that cannot be captured any other way.
Without it, researchers cannot fully study end-stage disease biology, examine tumors across different areas of the brain, or understand the molecular changes that emerge as tumors progress through treatment and recurrence.
“Thanks to these patients and families, we are able to study stages of disease that otherwise would not be accessible,” said Koptyra. “Their contribution creates a lasting resource for the field and helps future generations of children facing these diseases.”
The CBTN Curated | GFAC Post Mortem represents an important step toward more complete models of pediatric brain tumor progression. More importantly, it gives researchers a more connected way to study how these diseases change over time so future children can benefit from earlier insights, better models of progression, and more informed treatment strategies.
