New registry aims to unlock secrets of rare cancer syndrome

NCT ID NCT04982744

Recruiting now Knowledge-focused Sponsor: Istituto Ortopedico Rizzoli Source: ClinicalTrials.gov ↗

First seen Jun 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study is creating a registry for people with Li-Fraumeni syndrome, a rare genetic condition that raises the risk of several cancers. Researchers will collect medical, genetic, and quality-of-life data from 200 participants in Italy. The goal is to better understand the disease and link genetic changes to health outcomes, but no treatment or drug is being tested.

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 help researchers better understand Li-Fraumeni syndrome and improve care for future patients.
What could go wrong: This is an observational registry, not a treatment trial. It will not directly benefit participants and may take years to yield meaningful results.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for LI-FRAUMENI SYNDROME are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

Conditions

The condition(s) this trial relates to.

Li-Fraumeni syndrome Li-fraumeni-like syndrome

As listed by the trial registrant

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

LI-FRAUMENI SYNDROME LI-FRAUMENI-LIKE SYNDROME

Contacts and locations

Locations

IRCCS Istituto Ortopedico Rizzoli
ENROLLING_BY_INVITATION

Bologna, Emilia-Romagna, 40136, Italy
Irccs Istituto Ortopedico Rizzoli
RECRUITING

Bologna, Emilia-Romagna, 40136, Italy

More trials for these conditions

Other studies related to the condition(s) this trial covers.