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Massive european study launches to unlock secrets of rare head and neck cancers

NCT ID NCT05483374

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

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 24, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This large observational registry aims to collect data from over 13,000 adults across Europe with rare head and neck cancers, including cancers of the nasopharynx, nasal cavity, salivary glands, and middle ear. Researchers will track patient outcomes like survival, treatment response, and side effects to better understand these uncommon diseases. The goal is to improve future care by identifying factors that influence prognosis and treatment effectiveness.

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 improve understanding of rare head and neck cancers, leading to better treatment guidelines and care.
What could go wrong
This is an observational study, not a treatment trial. It collects existing data, so it cannot directly test new therapies or prove cause and effect.

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

Study facts

What this study's own registry entry says, in plain language.

Participants

About 13,600 people

The number the study aims to enrol. It can still change while the study runs.

Started

May 2022

Expected to finish

Dec 2030

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

It is an hospital based registry thus, hospitals experts in head and neck cancer. This registry won't select a sample of patients, but it will include every accordant patient present in each facility.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Patients with epithelial tumours of nasopharynx; nasal cavity and paranasal sinuses; salivary gland cancer in large and small salivary glands; and middle ear (i.e. squamous carcinoma; adenocarcinoma; neuroendocrine; adenosquamous carcinoma, teratocarcinosarcoma, NUT carcinoma, odontogenic tumors) + neuroendocrine and adenocarcinoma in hypopharynx; oropharynx; larynx; oral cavity and lip + odontogenic carcinoma in oral cavity. * Adult patients (aged ≥18 years). * Diagnosis performed or verified by the expert centre entering the patient information in the registry. * Patients entering the HCP at any clinical phase of the disease (diagnosis, treatment of primary cancer, treatment of recurrence, treatment of M+ etc.). The HCP can decide, based on its resources, the number of patients on whom it can collect data. * New patients managed by the HCP from 2021 onwards plus patients managed by the HCP, who are actively followed up at the hospital, with year of diagnosis dating back to maximum 2018. Exclusion Criteria: • Patients (aged \< 18 years)

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Conditions

The condition(s) this trial relates to.

head and neck cancer Head and Neck Neoplasms malignant tumor of nasopharynx middle ear carcinoma nasal cavity and paranasal sinus carcinoma nasopharyngeal carcinoma nasopharyngeal neoplasm Paranasal Sinus Neoplasms salivary gland cancer

As listed by the trial registrant

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

Head and neck cancer Middle ear carcinoma Nasal cavity and paranasal sinus cancer Nasopharynx cancer Salivary gland cancer

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    10 sites in 3 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Centro Nazionale di Adroterapia Oncologica

    RECRUITING

    Pavia, Pavia, 27100, Italy

  • Fondazione IRCCS Istituto Nazionale dei Tumori

    RECRUITING

    Milan, Milan, 20133, Italy

  • IRCCS Istituto Clinica Humanitas

    RECRUITING

    Rozzano, Milano, 20089, Italy

  • IRCCS Istituto Europeo di Oncologia

    RECRUITING

    Milan, Milano, 20141, Italy

  • IRCCS Istituto Nazionale Tumori Regina Elena

    RECRUITING

    Roma, Roma, 00144, Italy

  • IRCCS Ospedale Policlinico San Martino

    RECRUITING

    Genova, Genova, 16132, Italy

  • IRCCS Ospedale San Raffaele

    RECRUITING

    Milan, Milano, 20132, Italy

  • Masaryk Memorial Cancer Institute

    NOT_YET_RECRUITING

    Brno, Brno, 656 53, Czechia

  • Nuovo Ospedale di Prato - S. Stefano

    NOT_YET_RECRUITING

    Prato, Prato, 59100, Italy

  • University Hospital Essen

    NOT_YET_RECRUITING

    Essen, Hesse, 45147, Germany

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