Towards a European prospective data registry for particle therapy.

Area of Science:

• Oncology
• Medical Physics
• Radiotherapy

Background:

• Evidence for particle therapy (PT) efficacy compared to photon-based radiotherapy is limited.
• Randomized trials are essential but time-consuming; real-world data registries offer a complementary approach.
• The European Particle Therapy Network (EPTN) is developing a prospective PT data registry across European centers.

Discussion:

• Key challenges include standardizing technical and dosimetric data nomenclature and structure.
• Addressing data protection, transfer, and processing requirements within European regulations is critical.
• A federated data registry model with transparent, agile governance is proposed to navigate these hurdles.

Key Insights:

• Prospective data collection is vital for advancing PT evidence.
• Harmonization and data protection are significant but surmountable obstacles.
• A federated model offers a viable solution for European PT data sharing.

Outlook:

• Securing sustainable funding for registry operation beyond the initial setup is a primary concern.
• Successful implementation will enhance the evidence base for PT, guiding future clinical practice and research.
• The EPTN registry aims to become a cornerstone for PT development in Europe.