The Data Working Group develops the infrastructure needed to capture and connect sarcoma data from around the world. By integrating patient-reported outcomes, clinical information, registries, and translational research, the group ensures that every patient’s experience contributes to a deeper understanding of ultra-rare sarcomas.

This group oversees data governance, access control, usage policies, and compliance with international regulatory standards. Its work enables the PUSH Platform to combine clinical, laboratory, and biobank data to accelerate discovery and improve outcomes for people diagnosed with sarcoma.

Our Objectives
The Data Working Group is designing the core data architecture for the PUSH Platform, identifying technology partners, and defining the principles that will guide data sharing and compliance. Working closely with the Legal Working Group and other collaborators, the team aims to ensure that the PUSH data ecosystem is secure, interoperable, and aligned with global research standards.

Our Core Initiatives

• Developing the conceptual design and functional requirements for the data platform.


• Establishing principles for data governance, sharing, and ethical use.


• Building collaborations with researchers and organizations to maximize the scientific value of collected data.