A comprehensive European Colorectal Cancer Cohort dataset

March 12, 2026

Petr Holub 1 2, Outi Törnwall 3, Eva Garcia Alvarez 4, Rumyana Proynova 5, Florian Stampe 5, Saher Maqsood 5, Maxmilian Ataian 6, Irene Schlünder 3, Olli Carpén 7, Gerrit Meijer 8, Rudolf Nenutil 9, Dalibor Valík 10 11, Barbara Parodi 12, Annemieke Hiemstra 8, Mariska Bierkens 8, Esmeralda Castanos-Vélez 13, Frank Ückert 6, Diogo Alexandre 5, Ondřej Vojtíšek 9, Anna-Liisa Bader 3, Birgit Simell 3, Caitlin Ahern 3, Vitomir Horvat 3, Erik Steinfelder 3, Matteo Gnocchi 14, Marco Moscatelli 14, Alexander Fürbaß 3, Jiří Horák 3, Francesca Frexia 15, Cecilia Mascia 15, Alessandro Sulis 15, Giovanni Delussu 15, Mauro Del Rio 15, Vittorio Meloni 15, Luca Pireddu 15, Simone Leo 15, Marco Enrico Piras 15, Martin Kačenga 16, Stéphanie Gofflot 17, Sebastian Mate 18, Hans-Ulrich Prokosch 18 19, Paolo Romano 12, Daniela Pistillo 20, Michael Hoffmeister 21, Alexander Brobeil 22, Amila Kugic 23, Berthold Huppertz 24, Valentina Paleari 20, Heimo Müller 25, Robert Reihs 25, Timo Gemoll 26, Yannick Bantel 27, Tobias Sjöblom 28, Kyriacos Kyriacou 29, Simona di Martino 30, Gennaro Ciliberto 31, Ann-Kristin Kock-Schoppenhauer 32, Martina Oberländer 33, Jens K Habermann 3 32, Gabriele Husmann 34, Per-Henrik D Edqvist 28, Inti Zlobec 35, Martin D Berger 36, Lars Boeckmann 26 37, Fabienne George 38, Tom Southerington 39, Daniel P Brucker 40, Laurence Faugeras 38, Joanna Vella 41, Alex Felice 41, Malcolm Pace 41, Chiara Fallerini 42, Alessandra Renieri 42, Andreas Hadjisavvas 43, Karine Sargsyan 25 44 45, Maria A Loizidou 29, Tatiana Besse-Hammer 46, Franziska Vogl 23, Jan-Eric Litton 47, Michael Hummel 13, Kurt Zatloukal 48, Marialuisa Lavitrano 49

Abstract

Colorectal cancer (CRC) is a leading cause of cancer-related deaths worldwide. The Biobanking and Biomolecular Resources European Research Infrastructure (BBMRI-ERIC) established a CRC-Cohort with European coverage contributed by 26 biobanks from 12 countries. This retrospective, multi-center study contains structured and curated clinical data, supporting research on biomarkers for early detection, prognosis, and treatment. A phenotypical/clinical data model has been defined and individual-level data from 10,780 CRC patients have been collected at BBMRI-ERIC in the central data deposition service hosted as part of its services. The participating biobanks host additional data, which can be accessed on request and used to derive additional data. This mechanism has been used to extend the collected data with scans of histopathological slides to support research in artificial intelligence in digital pathology and with whole genome sequencing data to pilot a use case of the upcoming European Health Data Space (EHDS). Here we present the methodology, the quality assurance mechanisms, and the implementation of FAIR and FAIR-Health principles applied to build the CRC-Cohort.

  1. BBMRI-ERIC, Neue Stiftingtalstrasse 2/B/6, 8010, Graz, Austria. petr.holub@bbmri-eric.eu.
  2. Insitute of Computer Science, Masaryk University, Šumavská 525/33, 60200, Brno, Czech Republic. petr.holub@bbmri-eric.eu.
  3. BBMRI-ERIC, Neue Stiftingtalstrasse 2/B/6, 8010, Graz, Austria.
  4. BBMRI-ERIC, Neue Stiftingtalstrasse 2/B/6, 8010, Graz, Austria. eva.garcia-alvarez@bbmri-eric.eu.
  5. BBMRI.de/German Biobank Alliance and German Cancer Research Center, Heidelberg, Germany.
  6. Institute of Applied Medical Informatics, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
  7. University of Helsinki, Helsinki, Finland.
  8. Netherlands Cancer Institute (NKI), Amsterdam, The Netherlands.
  9. Masaryk Memorial Cancer Institute, Žlutý kopec 543/7, 60200, Brno, Czech Republic.
  10. Faculty of Medicine, Masaryk University, Kamenice 5, 62700, Brno, Czech Republic.
  11. Faculty Hospital Brno, Jihlavská 340/20, 62500, Brno, Czech Republic.
  12. IRCCS Ospedale Policlinico San Martino, Largo Rosanna Benzi 10, 16132, Genova, Italy.
  13. Charité – Universitätsmedizin Berlin, Berlin, Germany.
  14. National Research Council-Institute of Biomedical Technologies, Segrate, Italy.
  15. CRS4, Visual and Data-Intensive Computing Group, Loc. Piscina Manna, 09050, Pula, CA, Italy.
  16. Insitute of Computer Science, Masaryk University, Šumavská 525/33, 60200, Brno, Czech Republic.
  17. Biotheque Hospitalo-Universitaire de Liege, CHU de Liege, Avenue Hippocrate B23+1, 4000, Liege, Belgium.
  18. Medical Center for Information and Communication Technology, Universitätsklinikum Erlangen, Krankenhausstraße 12, 91054, Erlangen, Germany.
  19. Chair of Medical Informatics, Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU), Wetterkreuz 15, 91058, Erlangen-Tennenlohe, Germany.
  20. Center for Biological Resources, IRCCS Humanitas Research Hospital, Via Manzoni 56, 20089, Rozzano, MI, Italy.
  21. German Cancer Research Center (DKFZ), Division of Clinical Epidemiology of Early Cancer Detection, Im Neuenheimer Feld 581, 69120, Heidelberg, Germany.
  22. Institute of Pathology; Tissue Bank of the National Center for Tumor Diseases (NCT), University of Heidelberg, Heidelberg, Germany.
  23. Biobank Graz, Medical University of Graz, Neue Stiftingtalstraße 2/B/2, 8010, Graz, Austria.
  24. Medical University of Graz, Division of Cell Biology, Histology and Embryology, Gottfried Schatz Research Center, Graz, Austria.
  25. International Biobanking and Education, Medical University Graz, Neue Stiftingtalstrasse 2, 8010, Graz, Austria.
  26. Section for Translational Surgical Oncology and Biobanking, Department of Surgery, University of Luebeck and University Hospital Clinic Schleswig-Holstein, Ratzeburger Allee 160, 23538, Lübeck, Germany.
  27. CeGaT GmbH, Paul-Ehrlich-Straße 23, D-72076, Tübingen, Germany.
  28. Uppsala University, Dept Immunology, Genetics and Pathology, Dag Hammarskjöldsväg 20, 75185, Uppsala, Sweden.
  29. The Cyprus Institute of Neurology and Genetics, Iroon Avenue, Agios Dometios, 2371, Cyprus.
  30. Pathology Unit and Biobank IRCCS- Regina Elena National Cancer Institute, via elio chianesi 53, Rome, Italy.
  31. IRCCS National Cancer institute Regina Elena, Via Elio Chianesi 53, 00144, Rome, Italy.
  32. IT Center for Clinical Research, University of Lübeck and University Hospital Schleswig-Holstein, Lübeck, Germany.
  33. Interdisciplinary Biobank Centre – Lübeck, University of Luebeck and University Hospital Clinic Schleswig-Holstein, Ratzeburger Allee 160, 23538, Lübeck, Germany.
  34. University Cancer Center Frankfurt, University Hospital Frankfurt, Theodor-Stern-Kai 7, 60590, Frankfurt, Germany.
  35. Institute of Tissue Medicine and Pathology, University of Bern, Murtenstrasse 31, CH-3008, Bern, Switzerland.
  36. Department of Medical Oncology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
  37. Clinic and Policlinic for Dermatology and Venereology, University Medical Center Rostock, Strempelstraße 13, 18057, Rostock, Germany.
  38. CHU UCL Namur 1, av Gaston Therasse, 5530, Yvoir, Belgium.
  39. University of Turku, 20014, Turun yliopisto, Turku, Finland.
  40. University Hospital Frankfurt, 60590, Frankfurt, Germany.
  41. The Centre for Molecular Medicine and Biobanking, University of Malta, MSD2080, Msida, Malta.
  42. University of Siena, Viale Bracci, 1, 53100, Siena, Italy.
  43. Department of Cancer Genetics, Therapeutics & Ultrastructural Pathology The Cyprus, Iroon Avenue, 2371, Ayios Dometios, Nicosia, Cyprus.
  44. Department of Medical genetics, Yerevan State Medical University Yerevan, Yerevan, Armenia.
  45. Cancer Center, Cedars-Sinai Medical Center, Los Angeles, CA, USA.
  46. CHU Brugmann, Place A. Van Gehuchten 4, 1020, Bruxelles, Belgium.
  47. Karolinska Instituet, Stockholm, Sweden.
  48. Diagnostic and Research Center for Molecular Biomedicine, Medical University Graz, Neue Stiftingtalstrasse 6, 8010, Graz, Austria.
  49. University Milano Bicocca, Milan, Italy.