Familial Adenomatous Poliposys Italian Network (Rete Italiana Poliposi Adenomatosa Familiare)

Summary

RIPAF (Rete Italiana Poliposi Adenomatosa Familiare) is a national, multicenter observational registry designed to establish a coordinated Italian network for the management of Familial Adenomatous Polyposis (FAP) and related adenomatous polyposis syndromes. The registry includes patients with APC-related FAP (classic and attenuated forms), MUTYH-associated polyposis (MAP), and adenomatous polyposis not associated with APC or MUTYH mutations (NAMP), including cases linked to other susceptibility genes or without identified pathogenic variants.

The study combines retrospective and prospective data collection across 28 Italian centers. Its primary purpose is to generate standardized, large-scale clinical data to better characterize disease presentation and evolution, evaluate current surveillance and surgical strategies, and assess oncological outcomes and quality-of-care indicators in real-world practice.

The registry will collect detailed information on genotype-phenotype correlations, colorectal and upper gastrointestinal cancer incidence, desmoid tumor development, timing and type of prophylactic surgery, postoperative outcomes, and long-term survival. Additional objectives include evaluating adherence to surveillance guidelines, timing of genetic diagnosis, and preventive surgical uptake among at-risk relatives.

By harmonizing data collection and promoting collaboration among referral centers, RIPAF aims to reduce variability in clinical management across Italy, improve risk stratification and decision-making, and create a national platform to support future multicenter research initiatives and international collaborations in hereditary colorectal cancer syndromes.

Conditions

• Familial Adenomatous Polyposis (FAP)
• Attenuated Familial Adenomatous Polyposis (AFAP)
• MUTYH-Associated Polyposis (MAP)
• Non-APC/MUTYH Associated Polyposis (NAMP)
• Gardner Syndrome
• Turcot Syndrome
• Colorectal Cancer
• Desmoid Tumor
• Desmoid-Type Fibromatosis
• Duodenal Adenoma
• Upper Gastrointestinal Polyposis
• Hereditary Colorectal Cancer Syndrome
• Hereditary Polyposis Syndrome

Sponsors & Collaborators

• IRCCS Ospedale San Raffaele

  collaborator OTHER

• Istituto Nazionale Tumori IRCCS - Fondazione G. Pascale

  collaborator NETWORK

• Fondazione IRCCS Istituto Nazionale dei Tumori, Milano

  lead OTHER

Principal Investigators

• Marco Vitellaro, MD · IRCCS Istituto Nazionale dei Tumori

Eligibility

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2024-05-13

Primary Completion

2027-12-31

Completion

2027-12-31

Countries

• Italy

Study Locations