Question 1

WP1 Coordination

Accepted Answer

Deliverables WP1

NIPH - Giske Ursin - Project Coordinator

NIPH - Gijs Geleijnse - Scientific Coordinator

The primary goal of the Coordination Work Package (WP) is to ensure that the Joint Action (JA) meets all administrative and budgetary requirements, as well as achieves the general and specific objectives outlined in this proposal, in accordance with the grant agreement.
The specific objectives are to:
• Ensure that all contractual requirements are fulfilled and manage the Joint Action.
• Ensure the scientific and technical relevance of the JA's work and deliverables
• Manage the JA’s finance and administration, including the management and distribution of JA funds and providing support to partners on administrative and financial matters.
• Manage project objectives and timeliness by managing reporting, quality control, and the timely completion of JA deliverables and milestones.
• Manage systematic communication with the European Commission, including JRC, HaDEA and DG SANTE, regarding the progress of the JA, and with partners and WP leaders to ensure the implementation of JA activities according to plan.

Question 2

WP2 Communication and Dissemination

Accepted Answer

Deliverables WP2

ICO, Spain - Esteve Rodon Navarro - WP Lead

IKNL, The Netherlands - Jolanda Sinha - WP Co-lead

The main objective of this WP is to achieve an effective promotion of the project and its results to the relevant stakeholders and public and encourage their support and adoption of project recommendations.
Specific objectives are as follows:
• To ensure a well-coordinated communication between all participants.
• To define and establish the Communication and Dissemination strategy.
• To maximise dissemination efforts and results among all partners.
• To organise/participate in transnational events.
• To define and reach the target audience and stakeholders at the levels of institutions, professional societies, patient advocates, policymakers, academia, and the public.
• To provide the means for dissemination and communication of the project actions and outputs.

Question 3

WP3 Evaluation

Accepted Answer

Deliverables WP3

CIPH, Croatia - Mario Šekerija - WP Lead

FFIS-R MURCIA, Spain - Pilar López Acuña - WP Co-lead

The general objective of this WP is to evaluate the progress of the Joint Action against its internal milestones and deliverables defined in the Grant Agreement, to assess the achievement of the action objectives and to assess whether the outcomes meet the needs of the target groups.
Specific objectives of this WP include:
• development of the scope and the methodology of the Evaluation Plan
• regular performance of defined evaluation activities regarding process, outputs and outcomes of the Action
• creation of the Interim and Final evaluation report
• development and execution of the Quality assessment plan, resulting in the Quality assessment report.

Question 4

WP4 Sustainability

Accepted Answer

Deliverables WP4

LIH, Luxembourg - Claudine Backes - WP Lead

EASP, Spain - Maria Jose Sanchez - WP Co-lead

EASP, Spain - Dafina Petrova

The general objective of SUSTAIN-IT is to develop a sustainability plan to help implement, sustain, and strengthen the results of CancerWatch, to ensure lasting improvements of both the ECIS and the PBCRs. Specific objectives include (1) to identify and promote sustainability elements necessary to implement the policies, procedures activities, software and best practices identified and created in CancerWatch, (2) to advocate for the strengthening of PBCR and their role in cancer surveillance and control among decision makers at regional, national and EU levels and (3) to work closely with JRC-ENCR for sustained effective quality control and processes that will ensure timely data for ECIS also in the future

Approach:
SUSTAIN-IT will identify transversal sustainability elements (e.g., barriers, facilitators, diversity elements…) necessary to consider for the successful implementation of CancerWatch results. It will also aim to strengthen PBCRs visibility and position as indispensable European experts in cancer surveillance and control, by transmitting both the needs and challenges faced by PBCRs and the unique contribution and opportunities they generate in terms of high-quality data and return-on-investment in cancer control.

SUSTAIN-IT will work closely with WPs 1-2 and 5-7 to help ensure that the policies, activities, and best practices recommended are as feasible and sustainable as possible to have a lasting effect on ECIS data quality and timeliness. To achieve this objective, this WP will be carried out on three levels:
(i)PBCR,
(ii) Stakeholders & Policies and
(iii) JRC as the secretariat for ENCR and ECIS coordinator.

Question 5

WP5 Enhancing European Cancer Registry Operations and Data Quality

Accepted Answer

Deliverables WP5

CS-R MURCIA, Spain - Maria Dolores Chirlaque - WP Lead

OIL, Slovenia - Vesna Zadnik - WP Co-lead

Work Package 5 (WP5) is dedicated to improving the operations and digitalization of European Population-Based Cancer Registries (PBCRs) to enhance the timeliness and quality of cancer data. The overarching goal is to increase the number of PBCRs capable of providing timely data to the European Cancer Information System (ECIS).

The WP is structured into three main focus areas:

1. Cancer Registry Assessment and Development (T5.1)

This task involves mapping all European PBCRs to understand their operational, legal, and financial frameworks using a standardized assessment tool. Registries will be categorized by maturity level (Established, Established with difficulties, Non-functioning) to develop tailored guidelines and standards for infrastructure and harmonization. A key proposal is the creation of a stable, centralized European Cancer Registry Hub to provide continuous support, capacity building, and legislative advice to registries across the continent.

2. Improving Cancer Data Capture and Curation (T5.2)

T5.2 focuses on modernizing data collection. This includes a proof-of-concept study to explore using AI (Large Language Models) to automatically interpret and code unstructured text from pathology reports. It also assesses the potential of the new European Health Record Exchange Format (EEHRxF) to facilitate a "push" system of data transfer from clinical sources to registries. Additionally, the task evaluates other data sources, such as hospital databases, to improve data capture efficiency and accuracy.

3. Automated Cancer Registration (T5.3)

This task seeks to automate the time-consuming processes of data consolidation and validation. It will map existing automated processes and develop secure, transparent decision algorithms for creating a single, comprehensive cancer case from multiple sources. The WP will produce guidelines for implementing these automatic procedures. Finally, a proof-of-concept study will demonstrate how these automated methods can be integrated to establish or enhance new, resource-efficient PBCRs, specifically for screen-detectable and childhood cancers, thereby increasing European population coverage.

Question 6

WP6 Enhancing Data Quality and Accessibility

Accepted Answer

Deliverables WP6

IKNL, The Netherlands - Matthijs Sloep - WP Lead

NCRI, Ireland - Deirdre Murray - WP Co-lead

Work Package 6 (WP6) is focused on significantly improving the quality, accessibility, and reusability of data from European Population-Based Cancer Registries (PBCRs). This is achieved through standardization, quality assessment, and alignment with the forthcoming European Health Data Space (EHDS) requirements.

Standardizing Quality and Data (T6.1 & T6.3)

WP6 establishes a standardized system of data quality labels and badges based on established international metrics (e.g., IARC, NAACCR) and European standards (e.g., FAIR, EHDS). These badges will document the accuracy, completeness, and timeliness of PBCR data, aiding in improvement efforts and determining data utility. Furthermore, the task focuses on Metadata Standardization, reviewing EHDS requirements (like Health DCAT-AP) to create a compliant metadata model and implementing a new catalogue tool to enhance data discoverability and interoperability.

Tools for Assessment and Linking (T6.2 & T6.4)

The WP will develop a new software tool to automatically assess PBCR data quality and generate the defined labels and badges. This tool will be used to conduct a baseline quality assessment of the latest ECIS data call, identifying critical barriers and facilitators to quality improvement. T6.4 focuses on creating a blueprint for data linking, including a roadmap and technical guidelines for integrating PBCR data with other health sources (like screening data). This includes pilots using the OMOP Common Data Model to achieve interoperability.

Access and Governance (T6.5)

The final task ensures that improved data is accessible for research under secure and compliant conditions. It involves developing a strategic plan for aligning data access with the EHDS and establishing a robust governance structure with clear rules and responsibilities. The project will implement tools to support the data access request process and will test the new system through an open data request call (e.g., for survival analysis) to confirm practical effectiveness.

Question 7

WP7 Advanced Cancer Surveillance and Indicator Calculation

Accepted Answer

Deliverables WP7

BCR, Belgium - Liesbet Van Eycken - WP Lead

FCR, Finland - Janne Pitkäniemi - WP Co-lead

Work Package 7 (WP7) aims to establish the data from the European Network of Cancer Registries (ENCR) as a foundational resource for cancer surveillance and research within the European Cancer Information System (ECIS). Its goal is to generate key epidemiological indicators and reliable national estimates to inform policymakers, healthcare professionals, and citizens about the state of cancer in Europe.

Defining Key Indicators (T7.1)

This task focuses on defining and documenting the methodology and quality criteria for survival and prevalence indicators. Both indicator types will be categorized into Basic (Level 1) and Advanced Levels (e.g., cure models, complete prevalence) to guide a phased implementation. Comprehensive roadmaps will be developed to prioritize the short, medium, and long-term integration of these metrics into ECIS.

Calculating Indicators (T7.2)

WP7 is creating CRATE2, an open-source, R-based software tool that extends the existing CRATE1 to calculate the newly defined epidemiological indicators. CRATE2 will support both centralized calculation (for registries providing individual data) and decentralized calculation (for those providing only aggregated data). The task includes developing the tool, defining deployment requirements, and ensuring its long-term sustainability.

Handling Partial Data Coverage (T7.3)

This task addresses the challenge of incomplete geographic coverage in some countries. It will establish a collaborative framework and guidelines to harmonize national cancer estimates and minimize discrepancies between those produced nationally and those by ENCR-JRC for ECIS. The goal is to define essential elements and methods for producing consistent national indicators, particularly for trend analysis.

In-depth Dive Analyses (T7.4)

T7.4 showcases the scientific value of ENCR data by conducting in-depth research analyses using specific use cases. By leveraging the quality assessments from WP6, these analyses aim to improve the comparability of PBCR data for complex variables (like stage and treatment). The insights gained will generate actionable recommendations for future ECIS system improvements and enhance the visibility of participating PBCRs.

Work Plan

The CancerWatch JA consists