French national cohort of people with PRSS1 mutations
Official title: French National Cohort of Patients With PRSS1 Mutations
Run by Assistance Publique - Hôpitaux de Paris · NCT07413029 · Data updated 2026-11-12
This project will follow people with PRSS1 gene mutations to see if they develop pancreatic adenocarcinoma and to describe how hereditary pancreatitis progresses over time.
Quick facts
| Study type | Observational |
|---|---|
| Sex | All |
| Enrollment | 800 (estimated) |
| Sponsor | Assistance Publique - Hôpitaux de Paris Academic / other |
| Locations | 1 site (Clichy-sous-Bois) |
| Status | Recruiting |
| Started | November 10, 2024 |
| Main results expected | November 30, 2044 |
| Study ends | December 31, 2044 |
| Registry record updated | February 17, 2026 |
| Trial ID | NCT07413029 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
People who carry a known pathogenic PRSS1 mutation and are followed at one of the participating French centers are ideal candidates.
✕Probably not a fit
Individuals without a PRSS1 mutation, those not followed at participating centers, or those who withhold consent for data collection are unlikely to benefit directly from this cohort.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational national cohort will identify people carrying PRSS1 mutations from genetics laboratories in Brest, Cochin-Paris, and Lille and enroll them through their treating physicians. Investigators will collect medical record data and ask participants to complete questionnaires to document clinical history, pancreatitis episodes, interventions, and outcomes. The primary focus is to measure the incidence of pancreatic adenocarcinoma among PRSS1 carriers while describing phenotypic variability and the natural history of hereditary pancreatitis. Pooling data across centers aims to improve understanding of risk factors, timeline of disease progression, and inform future surveillance and care recommendations.
Why it matters
Potential benefit: If successful, the cohort could provide clearer estimates of cancer risk and natural history that help guide screening and management for people with PRSS1 mutations.
How similar studies have gone: Smaller cohorts and case series have suggested an increased pancreatic cancer risk in hereditary pancreatitis, but large national cohort data are limited and definitive risk estimates remain lacking.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Being a carrier of a known genetic mutation in the PRSS1 gene coding for cationic trypsinogen * Be followed in one of the participating centers Exclusion Criteria: * Opposition to data collection, expressed by the patient or one of their legal representatives
Where it's running
-
Rebours
Clichy-sous-Bois, France Recruiting
Study contacts
- Principal investigator: Vinciane REBOURS — Aphp
- Study coordinator: Vinciane REBOURS
- Email: vinciane.rebours@aphp.fr
- Phone: +33 1 40 87 52 15
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.