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The Italian registry of families at risk for pancreatic cancer (IRFARPC): implementation and evolution of a national program for pancreatic cancer surveillance in high-risk individuals

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Abstract

Screening programs for early detection and treatment of pancreatic cancer (PC) and its precursor lesions are increasingly implemented worldwide to reduce disease-specific lethality. Given the relatively low prevalence of the disease, the ideal target of such approaches is an enriched cohort of individuals harboring a lifetime risk of developing PC significantly higher compared to the general population, given either a substantial aggregation of PC cases in their family (i.e. familial pancreatic cancer) or a genomic landscape enriched with pathogenic variants associated with pancreatic carcinogenesis (i.e. mutation carriers). In Italy, a national registry for the census and surveillance of high-risk individuals for PC was launched in 2015, enrolling some 1200 subjects as of today. In this perspective, the scientific background, multi-level structure, and evolution of IRFARPC are outlined, as well as its long-term results, future developments, and areas for improvement.

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Acknowledgements

FC is supported by the Umberto Veronesi Foundation. This work was supported by the Italian Ministry of Health and the Italian Foundation for the Research of Pancreatic Diseases (FIMP), project #CUPJ38D19000690001. The funding sources had no role in the study design, collection, analysis and interpretation of data, as well as manuscript drafting and decision to publish.This manuscript is dedicated to the memory of Massimo Canonica, Cosimo Caputo and Mario Sala, who passed away from pancreatic cancer and greatly supported pancreatic cancer research and the PROPH-ITA study.

Author information

Author notes

  1. Fabio Casciani and Livia Archibugi contributed equally to the study and share the first authorship.

  2. Salvatore Paiella and Gabriele Capurso share the senior authorship.

Authors and Affiliations

  1. Pancreatico-Biliary Endoscopy and Endosonography Division, Pancreas Translational and Clinical Research Center, IRCCS San Raffaele Hospital, Vita-Salute San Raffaele University, Milan, Italy

    Livia Archibugi & Gabriele Capurso

  2. Unit of Pancreatic Surgery, The Pancreas Institute, University of Verona Hospital Trust, Verona, Italy

    Fabio Casciani & Salvatore Paiella

  3. Department of Gastroenterology, Endoscopy Unit, Humanitas Research Hospital, IRCCS, Rozzano, MI, Italy

    Silvia Carrara

  4. Department of Surgery, Dentistry, Pediatrics and Gynaecology, University of Verona, Verona, Italy

    Erica Secchettin

  5. Division of Pancreatic and Transplantation Surgery, Pancreas Translational and Clinical Research Center, IRCCS San Raffaele Hospital, Vita-Salute San Raffaele University, Milan, Italy

    Massimo Falconi

  6. Vita-Salute San Raffaele University, Milan, Italy

    Massimo Falconi & Gabriele Capurso

Authors
  1. Livia Archibugi
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Contributions

L.A. study planning, data collection, analysis and interpreting, manuscript drafting. The Author approved the final version of the manuscript.F.C. study planning, data collection, analysis and interpreting, manuscript drafting. The Author approved the final version of the manuscript.S.C. study planning, data collection, analysis and interpreting, manuscript drafting. The Author approved the final version of the manuscript.E.S. study planning, data analysis and interpreting, manuscript drafting. The Author approved the final version of the manuscript.M.F. study planning, analysis and interpreting, manuscript drafting. The Author approved the final version of the manuscript.G.C. study planning, data collection, analysis and interpreting, manuscript drafting. The Author approved the final version of the manuscript.S.P. study planning, data collection, analysis and interpreting, manuscript drafting. The Author approved the final version of the manuscript.

Corresponding authors

Correspondence to Gabriele Capurso or Salvatore Paiella.

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Competing interests

Salvatore Paiella receives consultancy honoraria from AlphaTau.

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This manuscript is dedicated to the memory of Massimo Canonica, Cosimo Caputo, and Mario Sala, who passed away from pancreatic cancer and greatly supported pancreatic cancer research and the PROPH-ITA study.

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Archibugi, L., Casciani, F., Carrara, S. et al. The Italian registry of families at risk for pancreatic cancer (IRFARPC): implementation and evolution of a national program for pancreatic cancer surveillance in high-risk individuals. Familial Cancer (2024). https://doi.org/10.1007/s10689-024-00366-3

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