# Management of patients with increased risk for familial pancreatic cancer: updated recommendations from the International Cancer of the Pancreas Screening (CAPS) Consortium

Source: https://onco.cc/key-papers/paper-caps-consortium-surveillance-recommendations-gut-2020/  
OnCo record `paper-caps-consortium-surveillance-recommendations-gut-2020` (Key paper). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

The 2020 international consensus on who should have regular pancreatic scans because of family history or an inherited gene change, when to start, which scans to use and what the surveillance is trying to find.

## Summary

The International Cancer of the Pancreas Screening Consortium met in 2018 and used a modified Delphi process (consensus at 75 percent agreement) to update its recommendations for high-risk individuals. Consensus was reached on 55 statements. The goals of surveillance, to identify high-grade dysplastic precursor lesions and T1N0M0 pancreatic cancer, were unchanged. For familial risk, surveillance should start no earlier than age 50 or 10 years earlier than the youngest affected relative, with the panel split between 50 and 55; germline ATM carriers with one affected first-degree relative became eligible. Endoscopic ultrasound and MRI with magnetic resonance cholangiopancreatography are the preferred tests, without consensus on how to alternate them; annual surveillance is recommended when no concerning lesion is present. Disagreement remained over hereditary pancreatitis and indeterminate lesions. Surveillance should be performed in a research setting by multidisciplinary teams in expert centres until more evidence is available.

## Fields

- Kind: Key paper
- Last checked: 2026-09-24
- Tags: pancreatic-evidence
- Journal: Gut
- Year: 2020
- DOI: 10.1136/gutjnl-2019-319352
- Authors: Goggins M, Overbeek KA, Brand R, et al.
- Findings: Consensus on 55 statements; goals of surveillance are high-grade dysplasia and T1N0M0 cancer.; Start at 50 or 55, or 10 years before the youngest affected relative; germline ATM carriers with one affected first-degree relative now eligible.; Endoscopic ultrasound and MRI with cholangiopancreatography preferred; annual interval when nothing concerning is seen.; Surveillance to be run in research settings by multidisciplinary teams in expert centres.
- What it means: The rulebook behind the CAPS cohorts and the UK EUROPAC programme; it is also the reason surveillance for carriers is not yet a routine NHS service, because the consortium itself asked for it to stay within research until benefit was shown.
- Caveats: Consensus, not trial evidence; the recommendations are explicitly provisional.; Written before the CAPS5 outcomes (2022) that showed most surveillance-detected cancers at stage I.

## Sources

- Gut 2020: https://doi.org/10.1136/gutjnl-2019-319352
- PubMed: https://pubmed.ncbi.nlm.nih.gov/31672839/

## Connected records

- key papers: [Association Between Inherited Germline Mutations in Cancer Predisposition Genes and Risk of Pancreatic Cancer](https://onco.cc/key-papers/paper-hu-germline-mutations-pancreatic-cancer-risk-jama-2018/), [Risk of Neoplastic Progression in Individuals at High Risk for Pancreatic Cancer Undergoing Long-term Surveillance](https://onco.cc/key-papers/paper-canto-caps-long-term-surveillance-gastroenterology-2018/), [The Multicenter Cancer of Pancreas Screening Study: Impact on Stage and Survival](https://onco.cc/key-papers/paper-dbouk-caps5-stage-survival-jco-2022/)
- cancers: [Intraductal papillary mucinous neoplasm and other pancreatic cystic precursors](https://onco.cc/cancers/ipmn-cystic-precursors/), [Pancreatic ductal adenocarcinoma](https://onco.cc/cancers/pancreatic/)
- technologies: [Germline (hereditary) testing](https://onco.cc/technologies/germline-testing/), [High-risk pancreatic surveillance (CAPS / PRECEDE)](https://onco.cc/technologies/pancreatic-surveillance/), [MRI](https://onco.cc/technologies/mri/)
- targets: [ATM](https://onco.cc/targets/atm/), [BRCA1 / BRCA2 (HRD)](https://onco.cc/targets/brca/), [CDKN2A](https://onco.cc/targets/cdkn2a/), [PALB2](https://onco.cc/targets/palb2/)
- institutions: [Johns Hopkins Hospital / Sidney Kimmel Comprehensive Cancer Center](https://onco.cc/institutions/johns-hopkins/)
- terms: [CAPS: the Cancer of the Pancreas Screening consortium and its surveillance studies (CAPS1 to CAPS5)](https://onco.cc/terms/caps-consortium-pancreatic-screening/), [Hereditary cancer syndromes](https://onco.cc/terms/hereditary-cancer-syndromes/)
- trials: [PRECEDE](https://onco.cc/trials/precede/)
- people: [Diane M. Simeone](https://onco.cc/people/diane-simeone/)
- bottlenecks: [Inherited risk is mostly unidentified](https://onco.cc/bottlenecks/b-hereditary-risk/), [The hardest cancers are found late](https://onco.cc/bottlenecks/b-early-detection/)
- journals: [Gut](https://onco.cc/journals/gut/)
- roadmaps: [Pancreatic cancer roadmap: from Whipple's operation to gemcitabine, FOLFIRINOX, adjuvant chemotherapy, PARP inhibition, KRAS inhibition, vaccines and the surveillance question](https://onco.cc/roadmaps/pancreatic-roadmap/)
- ideas: [Surveillance for every germline carrier found by universal testing, inside a registry rather than a research exception](https://onco.cc/ideas/idea-pdac-surveillance-for-every-germline-carrier/)

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