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Taking people in ItalyNo phase

Registry Following Adults in Italy Whose Families Carry Pancreatic Cancer Risk

Studies people with inherited higher risk of pancreatic cancer, using scans and endoscopic ultrasound checks.

Key facts

Who runs it
Associazione Italiana per lo Studio del Pancreas
Where
Milan, Peschiera del Garda, Rozzano, and Verona, ItalySee the 4 sites
Trial code
Registry title
Registry of Subjects at Risk of Pancreatic Cancer
Status
Recruiting
People taking part
1,000 people, planned
Started
20 Aug 2019
Expected to end
20 Sept 2045
Type of study
Observational, 6 groups
Treatments tested
  • MRCP
  • Endoultrasonography
Record updated
13 January 2023

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The registry is looking for adults with a higher inherited risk of pancreatic cancer. This includes families with several pancreatic cancer cases and people with certain gene changes or syndromes.

Age
18 to 80 years. For the radiologic follow-up, the starting age depends on the risk group: 45, 40 or 30 years, or younger than the youngest family case.
Sex
All sexes can join.
Disease stage
Not about disease stage. The trial is looking for people at inherited risk: at least two relatives with pancreatic cancer, FAMMM syndrome, Peutz-Jeghers syndrome, PRSS-1-, CFTR- or SPINK-1-related pancreatitis, or Lynch syndrome with a close relative with pancreatic cancer.
Biomarker or test result
Some people can join with a known BRCA1, BRCA2, p16 or PALB2 gene change plus a first- or second-degree relative with pancreatic cancer.

Main reasons for not taking part

  • Pregnancy

The registry criteria, word for word

Show all 10 criteriaShow less

Who can take part

  • individuals with at least two relatives suffering from pancreatic cancer, with at least 1 first-degree and until the third-degree
  • subjects with known genetic mutation of BRCA2, BRCA1, p16, PALB2 with at least 1 first- or 2nd-degree relative suffering from pancreatic cancer
  • subjects suffering from FAMMM Syndrome
  • subjects suffering from Peutz-Jeghers Syndrome
  • subjects suffering from PRSS-1- or CFTR- or SPINK-1- related pancreatitis
  • subjects suffering from Lynch syndrome with at least 1 first- or 2nd-degree relative suffering from pancreatic cancer
  • 45 years or 10 years younger than the youngest index case of pancreatic cancer in the family for familial cases
  • 40 years or 5 years younger than the youngest index case of pancreatic cancer for subjects suffering from hereditary/genetic pancreatitis, Lynch syndrome, or carrying a known BRCA 1/2, PALB2, p16 genetic mutation with familiarity for pancreatic cancer
  • 30 years for subjects suffering from FAMMM, Peutz-Jeghers syndrome

Who cannot take part

  • pregnancy

Check if you might fit

Answer for yourself. This is not a decision: only the study team can say whether you can take part.

  • Are you between 18 and 80 years old?

Where in Italy

  • San Raffele Vita Salute University HospitalMilan, ItalyContact: Massimo Falconi, MDTaking people
  • Ospedale PederzoliPeschiera del Garda, ItalyContact: Giovanni Butturini, MDTaking people
  • Istituto Clinico HumanitasRozzano, ItalyContact: Silvia Carrara, MDTaking people
  • Chirurgia Generale e del PancreasVerona, ItalyContact: Salvatore Paiella, MD, PhDTaking people

About the trial

What the trial wants to find out

IRFARPC is a multicenter national registry designed to study the diagnosis and predisposing factors of subjects with an inherited increased risk for pancreatic cancer.

The 6 groups in the trial

  • Familial pancreatic cancer relatives

    Treatment: MRCP and Endoultrasonography

  • Peutz-Jeghers syndrome

    Treatment: MRCP and Endoultrasonography

  • BRCA 1/2, PALB2, p16 mutations with familiarity for PC

    Known genetic mutation and at least 1 1st- or 2nd-degree relative suffering from PC

    Treatment: MRCP and Endoultrasonography

  • Lynch syndrome with familiarity for pancreatic cancer

    Treatment: MRCP and Endoultrasonography

  • FAMMM syndrome

    Treatment: MRCP and Endoultrasonography

  • Hereditary and genetic pancreatitis

    Treatment: MRCP and Endoultrasonography

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
Italian Registry of Families At Risk of Pancreatic Cancer
Plain-language title
Registry Following Adults in Italy Whose Families Carry Pancreatic Cancer RiskGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 12 November 2026.
Fit questions
Built from NCT04095195, who can take part
Record updated
13 January 2023