CHIEF Programme

CHIEF Deliverables

Thirteen final reports, the Romagna field test, scientific outputs and the project record.

CHIEF · 2022–2026

Final reports, papers and project record

This page records the final products and project events listed in the CHIEF deliverables document. It includes the final reports, publication, field-test and meeting information from that document; the achievement infographic and expert network appear on the CHIEF overview. Source files: Final products PDF · Editable Word file.

13 final reports

Technical deliverables

Activity 1 · Indicators and metadata (3 reports)

1. Metadata — definition, semantic description and FAIR-ification

Authors: F. Carinci, S. Cunningham, S. Fava, N. Klazinga, A. Lavens, J. Lepiksone, M. Massi Benedetti, T. Poljičanin, P. Rossing, J. Sándor and I. Štotl.

Final version 1.0 · 18 February 2025

2. Indicator framework — Diabetes Indicators Core Set

Authors: F. Carinci, S. Cunningham, S. Fava, N. Klazinga, A. Lavens, J. Lepiksone, M. Massi Benedetti, T. Poljičanin, P. Rossing and I. Štotl.

Final version 5.1.3 · 6 April 2025

3. Technical report specifying the description, metadata and contextualisation of indicators from data sources and registries to enable routine federated reporting of NCDs in Europe

Authors: F. Carinci, S. Cunningham, J. Dimnjaković, S. Fava, T. Poljičanin and I. Štotl.

Final version 1.0 · 25 September 2026

Activity 2 · Federated analytics (5 reports)

4. Use of federated software to measure the impact of risk factors and data quality for cardiovascular risk prediction among people with diabetes, using cohorts extracted from federated diabetes registers in Europe

Authors: F. Carinci, S. Cunningham, I. Štotl, Z. Baltāne and S. Fava.

Final version 1.1 · 17 September 2024

5. Operational plan to build a coherent EU Information System for NCDs: design of targeted studies for the timely reporting of NCD indicators in the European Health Data Space

Authors: F. Carinci and I. Štotl.

Final version 1.1 · 11 March 2025

6. Updated method to carry out automated reviews of data sources and registers across NCDs in EU countries: an application on needs and gaps for CVD risk stratification in diabetes

Authors: F. Carinci, S. Fava and I. Štotl.

Final version 0.5 · 17 April 2025

7. A proposal for a federated data analysis framework with practical examples provided of specific indicators

Authors: S. Fava and F. Carinci.

Final version 0.3 · 28 April 2025

8. Integration of federated analytics with metadata contextualisation in a multidisciplinary collaborative framework for the routine reporting of NCD indicators in Europe

Authors: F. Carinci, P. Di Bartolo, I. Štotl, S. Fava, S. Cunningham, L. Pennells, Z. Baltāne, S. Reiff, T. Poljičanin and J. Dimnjaković.

Final version 1.0 · 25 September 2026

Activity 3 · Stakeholder engagement (1 report)

9. Patient involvement in chronic disease registries

Authors: M. Massi Benedetti, E. Dupont, C. Michael, F. Carinci, S. Cunningham, J. Dimnjaković, T. Poljicanin, I. Štotl and N. Nicholson.

Final version 1.0 · 22 June 2026

Activity 4 · Privacy, governance and interoperability (3 reports)

10. Privacy, data governance and ethics in the handling of sensitive data: assessment of current practices in the field of diabetes

Authors: C. T. Di Iorio, E. Ronchi, I. Pristas and T. Buble.

Final version 4.0 · 15 March 2025

11. Data Linkage & Interoperability

Authors: C. T. Di Iorio, E. Ronchi, I. Pristas and T. Buble.

Final · 20 July 2024

12. Monitoring privacy, data protection, data governance, interoperability and ethics in registries and health information systems to balance compliance with the accurate reporting of NCD indicators

Authors: C. T. Di Iorio, E. Ronchi, F. Carinci, I. Štotl, I. Pristas and T. Buble.

Final version 5.0 · 15 July 2026

Activity 5 · Closing synthesis (1 report)

13. CHIEF Final Report

Final version 2.3 · 7 October 2026

Scientific output

Published and submitted papers

Published CHIEF papers

  1. Carinci F, Fava S, Štotl I, Nicholson N. Federated analytics for non-communicable disease surveillance in the European Health Data Space: a scoping review and conceptual framework. Frontiers in Public Health. 2026;14:1911992. Full text.
  2. Štotl I, Carinci F, Fava S, et al. FAIR foundations of a novel indicator vault for non-communicable diseases in the European Union: feasibility study for effective contextualisation of indicators. Frontiers in Digital Health. 2025. Full text.
  3. Carinci F, Nicholson N. Linking registries to deliver standardised NCD indicators in the European Health Data Space: why do we need a Collaborative Health Information European Framework? Frontiers in Public Health. 2025. Full text.
  4. Di Iorio CT, Ronchi E, Pristas I, Buble T, Nicholson N, Carinci F. Data Protection, Interoperability and Governance Assessment (DIGA) Tool: results from a proof-of-concept survey. Frontiers in Digital Health. 2025;7. Full text.
  5. Carinci F, Poljičanin T, Cunningham S, et al. A taxonomy of indicators for non-communicable diseases: agreement, definition, and contextual description using diabetes as a case study. Frontiers in Public Health. 2025;13. Full text.

Submitted manuscripts · 2026

  1. Di Iorio CT, Carinci F, Štotl I, Pristas I, Buble T, Nicholson N, Ronchi E. How ready are data holders for the European Health Data Space? Results of an international survey using a refined version of Data Protection, Interoperability and Governance Assessment (DIGA). Submitted, 2026.
  2. Massi-Benedetti M, Michael CM, Carinci F, et al. Patient involvement in chronic disease registries: a narrative review and roadmap for the implementation of participative European data platforms. Submitted, 2026.

Associated papers

  1. Nicholson N, Carvalho R, Štotl I. A FAIR perspective on data quality frameworks. Data. 2025;10(9):136. Article.
  2. Nicholson N, Štotl I. A generic framework for the semantic contextualisation of indicators. Frontiers in Computer Science. 2024;6. Article.
  3. Carinci F, Messina R, Mencarelli M, et al. Implementing a federated regional diabetes register in a decentralized health system: implications for healthcare organization and the European Health Data Space. Frontiers in Public Health. 2026;14:1864673. Article.

Field test

CHIEF–AUSL Romagna, Italy

The collaborative agreement covered the service contract “CHIEF DATA COLLECTION FIELD TEST”: provision of indicators describing aspects of diabetes incidence and care in the Romagna region, delivered as tables containing aggregated and anonymised data in compliance with applicable data-protection regulations.

Project record

Meetings and stakeholder events

Expert meetings

Year Meeting Date
2022 1st Annual Meeting 4 November 2022
2022 IDF Lisbon Conference Meeting 8 December 2022
2024 2nd Annual Meeting, JRC Ispra 25 October 2024
2025 3rd Annual Meeting, JRC Ispra 19 December 2025
2026 4th Annual Meeting, JRC Ispra 3 July 2026
2026 Final Meeting, JRC Ispra 12–13 October 2026

International workshop

Year Meeting Date
2022 IDF Lisbon CHIEF Workshop 8 December 2022

Stakeholder meetings

Year Meeting Date
2023 IDF Europe Regional Council & TEAM WHO Europe–IDF Europe High-Level Technical Summit on Diabetes 28 November 2023
2024 IDF Europe Regional Council Meeting, Rome, Italy 13 October 2024
2024 Diabetes Registries: Enabling High-Quality Diabetes Care, EUDF Symposium at EASD Conference 11 September 2024