Research Group

Adolescent and Young Adult (AYA)

The PNOC AYA Working Group exists to close the trial-access gap facing adolescents and young adults (AYAs) with pediatric-type CNS tumors, a population defined by tumor biology, not chronological age. Advances in molecular diagnostics now allow tumors to be characterized by their underlying biology (e.g., MAPK pathway alterations, H3 K27M status) rather than by the patient’s age at diagnosis. This means an AYA or adult patient with a pediatric-type molecular profile may qualify for pediatric-designed clinical trials that would otherwise be closed to them by age alone. This expands treatment options for a population whose tumors are often too rare, at any single site or within adult-focused trials, to otherwise support meaningful study.

Goals

1. Redefine eligibility by biology, not age. Use molecular/biomarker profiles to open PNOC trials to AYA and adult patients whose tumor biology matches the pediatric-type population being studied.
2. Build a cross-network referral pathway. Connect adult-treating oncologists to PNOC trial opportunities for patients with pediatric-type molecular profiles.
3. Increase accrual through consortium-level reach. Aggregate eligible patients nationally to overcome the low single-site incidence of these rare, biology-defined tumors.
4. Standardize AYA-specific psychosocial support for clinical trial infrastructure. Build fertility preservation, psychosocial support, transition-of-care planning, and survivorship follow-up into protocol design.
5. Generate the evidence base for eligibility reform. Track outcomes for biology-matched AYA patients to support durable, systemic changes to trial eligibility criteria.
6. Understand long-term medical issues and disability after tumor diagnosis and treatment. Track long-term data on medical, cognitive, and social outcomes in clinical trial patients.