Clinical trial Recruiting at 7 sites Observational Ages 18 and up

Registry for rare head and neck cancers in Europe

Official title: The Observational Clinical Registry of the European Reference Network on Rare Adult Solid Cancers: the Protocol for the Rare Head and Neck Cancers

Run by Fondazione IRCCS Istituto Nazionale dei Tumori, Milano · NCT05483374 · Data updated 2026-11-12

This study is collecting information on rare head and neck cancers to better understand them and improve treatment and care for patients across Europe.

More Head and Neck Cancer trials

Quick facts

Study typeObservational
Ages18 Years and up
SexAll
Enrollment13600 (estimated)
SponsorFondazione IRCCS Istituto Nazionale dei Tumori, Milano
Academic / other
Locations10 sites (Brno, Brno and 9 other locations)
StatusRecruiting
StartedMay 31, 2022
Main results expectedDecember 31, 2030
Study endsDecember 31, 2030
Registry record updatedApril 3, 2026
Trial IDNCT05483374 on ClinicalTrials.gov

Is this trial a fit for you?

Likely a good fit

Ideal candidates include adults aged 18 and older diagnosed with specific rare epithelial tumors of the head and neck.

Probably not a fit

Patients with common head and neck cancers or those under 18 years old may not benefit from this registry.

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational registry aims to collect and analyze data on rare head and neck cancers, including nasopharynx, nasal cavity, salivary glands, and middle ear cancers. By gathering information from various healthcare providers and existing databases, the registry seeks to describe the natural history of these cancers, evaluate prognostic factors, assess treatment effectiveness, and measure quality of care indicators. The initiative is part of the European Reference Network on rare adult solid cancers, which aims to improve research and care for these uncommon conditions.

Why it matters

Potential benefit: If successful, this registry could enhance understanding and treatment of rare head and neck cancers, leading to improved patient outcomes.

How similar studies have gone: Other registries for rare cancers have shown promise in improving patient care and outcomes, indicating that this approach could be beneficial.

Who can join: the full rules

Show full inclusion / exclusion criteria
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)

Where it's running

  • IRCCS Ospedale Policlinico San Martino
    Genova, Genova, Italy
    Recruiting
  • IRCCS Ospedale San Raffaele
    Milan, Milano, Italy
    Recruiting
  • IRCCS Istituto Europeo di Oncologia
    Milan, Milano, Italy
    Recruiting
  • IRCCS Istituto Clinica Humanitas
    Rozzano, Milano, Italy
    Recruiting
  • Fondazione IRCCS Istituto Nazionale dei Tumori
    Milan, Milan, Italy
    Recruiting
  • Centro Nazionale di Adroterapia Oncologica
    Pavia, Pavia, Italy
    Recruiting
Show 4 more locations
  • IRCCS Istituto Nazionale Tumori Regina Elena
    Roma, Roma, Italy
    Recruiting
  • Masaryk Memorial Cancer Institute
    Brno, Brno, Czechia
    Not yet recruiting
  • University Hospital Essen
    Essen, Hesse, Germany
    Not yet recruiting
  • Nuovo Ospedale di Prato - S. Stefano
    Prato, Prato, Italy
    Not yet recruiting

Study contacts

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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  • U87 CAR-T treatment for advanced head and neck tumors

    This study is testing a new CAR-T cell therapy to see if it can help people with advanced head and neck tumors when other treatments haven't worked.

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  • Airway ultrasound in head and neck cancer patients

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How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.