Collecting information from all sarcoma reference cancer centres worldwide: achievement and next steps

Abstract

Purpose of review: Sarcomas are a rare and heterogeneous group of tumours, making large-scale data collection crucial for research and ultimately improve patient outcomes. This review highlights recent initiatives in sarcoma data collection through national and international networks, emphasizing results derived from collaborative efforts. Given the increasing availability of electronic medical data, this review is timely assessing the readiness of sarcoma collaborative datasets to exploit innovation and increase sustainability in the long-term as well as international collaboration.

Recent findings: Through a systematic review we identified 8 major sarcoma databases (6 national; 2 international). These initiatives all enhanced prognostication and personalized medicine by also integrating clinical and genomic datasets, while increasing data standardization which is the basis for data interoperability and integration across reference centres. Notable efforts, such as the IDEA4RC project, are establishing interoperable data models using sarcoma as use case to enhance global research.

Summary: Collaborative data collection is essential when studying sarcomas. Strengthening international networks will generate real world data networks, increase research and its efficiency, and ultimately ameliorate patient care. Future efforts should focus on expanding data-sharing frameworks, implement innovative solutions for ensuring data interoperability and increase value of real-world evidence in research and therapeutic advancements.

Keywords: data collection; data interoperability; data model; networks; reference cancer centres; sarcoma.