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New national registry aims to improve care for rare genetic polyposis syndromes

NCT ID NCT07461246

Ongoing Knowledge-focused Sponsor: Fondazione IRCCS Istituto Nazionale dei Tumori, Milano Source: ClinicalTrials.gov ↗

First seen Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is a national registry collecting data from 1500 people with familial adenomatous polyposis (FAP) and related conditions across 28 Italian centers. It aims to better understand how these diseases progress, how they are currently managed, and what factors influence outcomes. No new treatments are being tested; instead, the registry will help improve future care guidelines and support research.

What this could mean

Our plain-language read of the trial. This is informational only — not medical advice or a prediction.

What this could lead to

If successful, this registry could provide better guidelines for managing polyposis syndromes and improve early detection and treatment strategies.

What could go wrong

This is an observational study, not a clinical trial testing a new treatment. It collects data only, so no direct benefit to participants is expected.

Disclaimer Read more

This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Conditions

The condition(s) this trial relates to.

Adenomatous Polyposis Coli attenuated familial adenomatous polyposis classic familial adenomatous polyposis colorectal cancer colorectal neoplasm desmoid tumor duodenal villous adenoma familial adenomatous polyposis 2 familial colorectal cancer Gardner syndrome hereditary mixed polyposis syndrome hereditary neoplastic syndrome intestinal polyposis syndrome mismatch repair cancer syndrome 1 stomach polyp

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

ATTENUATED FAMILIAL ADENOMATOUS POLYPOSIS (AFAP) COLORECTAL CANCER DESMOID TUMOR DESMOID-TYPE FIBROMATOSIS DUODENAL ADENOMA FAMILIAL ADENOMATOUS POLYPOSIS (FAP) GARDNER SYNDROME HEREDITARY COLORECTAL CANCER SYNDROME HEREDITARY POLYPOSIS SYNDROME MUTYH-ASSOCIATED POLYPOSIS (MAP) NON-APC/MUTYH ASSOCIATED POLYPOSIS (NAMP) TURCOT SYNDROME UPPER GASTROINTESTINAL POLYPOSIS

Contacts and locations

Locations

  • Fondazione IRCCS Istituto Nazionale dei Tumori

    Milan, 20133, Italy