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# Two-Day Workshop on Oncology Patient Registries
- URL: https://www.fdaweb.com/two-day-workshop-on-oncology-patient-registries/
- Published: 2025-08-05T12:00:00.000Z
- Updated: 2026-09-14T15:18:18.000Z
- Author: David McFarland
- Tags: Drugs, #legacy-id-D5159627

FDA’s Oncology Center of Excellence will host a two-day (8/27-28) virtual public workshop to advance the development of patient registries in oncology, with a focus on the rare childhood brain tumor known as diffuse midline glioma, also referred to as diffuse intrinsic pontine glioma. The workshop is intended to bring together stakeholders from across healthcare, research, regulatory, and patient advocacy communities to examine current registry efforts and explore future strategies aimed at accelerating treatment development.

The first day of the workshop will introduce key concepts in oncology registry development such as the use of common data elements and real-world examples of registries that have played a role in regulatory decision-making for cancer therapies, an [agency notice](https://www.fda.gov/industry/future-registries-oncology-08272025?ref=fdaweb.com) says. On the second day, the focus will narrow to diffuse midline gliomas, highlighting national and international initiatives working to collect and harmonize patient data. The session will include discussions on best practices, data quality standards, and how registries can be better designed to support future therapeutic advancements, the notice says.

Workshop goals include:

- Reviewing oncology registries that have successfully supported drug development.
- Outlining best practices for data collection and common data elements.
- Assessing the current state of national and international diffuse midline glioma registries.
- Exploring strategies to ensure registries are designed to meet future regulatory and clinical needs.
- Launching a sustained effort to improve registry infrastructure for rare pediatric cancers.