What types of data do CCRP partners generate?
All CCRP partners generate large volumes of patient-centric data through their activities, which are used to improve the treatment and experience of cancer patients. These include healthcare, histopathology, genomic, and medical imaging data generated during the diagnostic journey. Additional data includes information about treatments received and, for some patients, their views on outcomes and experiences (captured through PROMs and PREMs).
Patients also donate biological samples, making these invaluable resources available to clinical trials and laboratory researchers. This enables the generation of novel and experimental data that can further improve understanding, treatment strategies, and ultimately patient outcomes.
Making Full Use of Our Cancer Datasets
Beyond their primary purpose (e.g. healthcare, research, or clinical trials), cancer datasets have many secondary uses that extend well beyond their original intent. For example, trial data is being used by computer scientists in the Interdisciplinary Precision Oncology Cardiff Hub to develop Digital Twin methodologies for cancer patients.
To increase efficiency and reduce costs, trials such as QuicDNA are incorporating routinely collected healthcare data into their design, made available to researchers via secure data environments. The CCRP partnership will enhance and accelerate opportunities to use all available data in innovative ways—combining and linking information to enable mechanistic insights, treatment improvements, and better outcomes for all patients.
Welsh National Cancer Data Gateways
Several organisations in Wales act as gateways to different types of data, facilitating easy and reusable access across legal boundaries that might otherwise restrict sharing.
- Wales Cancer Biobank is a leading research resource that collects, stores, and provides access to high-quality biosamples and clinical data from cancer patients across Wales. Patients with known or suspected cancer are invited to donate surplus tissue and fluid samples—such as blood, urine, and saliva—for use in ethically approved cancer research projects worldwide.
- Digital Health and Care Wales (DHCW) is a Special Health Authority within NHS Wales, established in 2021 to lead the digital transformation of health and social care services. DHCW manages major national infrastructure such as the National Data Resource (NDR) platform, which aims to create a single clinical data repository by 2030.
- The SAIL Databank (Secure Anonymised Information Linkage) securely hosts billions of anonymised, person-based records from across Wales. It enables researchers to access and analyse rich, linkable datasets—including healthcare and administrative data—without compromising individual privacy.
Project-Specific Access to Data
In addition to national gateway projects, many NHS services and research units offer project-specific access to their data. For example, the Centre for Trials Research and Experimental Cancer Medicine Centre collect data under appropriate ethical approvals to enable future reuse. The WalesCAT project provides a route to access anonymised medical imaging data for research purposes.
The CCRP Discovery and Translation Group is actively working to optimise processes that increase access to cancer datasets and simplify the governance and ethics procedures required for legal data access.