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.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 13600 (estimated) |
| Sponsor | Fondazione IRCCS Istituto Nazionale dei Tumori, Milano Academic / other |
| Locations | 10 sites (Brno, Brno and 9 other locations) |
| Status | Recruiting |
| Started | May 31, 2022 |
| Main results expected | December 31, 2030 |
| Study ends | December 31, 2030 |
| Registry record updated | April 3, 2026 |
| Trial ID | NCT05483374 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
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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
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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
- Principal investigator: Annalisa Trama, MD — Fondazione IRCCS Istituto Nazionale dei Tumori, Milano
- Study coordinator: Lucia Buratti
- Email: EURACANregistry@istitutotumori.mi.it
- Phone: 0223902901
Similar studies
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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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Implantable microdevice drug screening for salivary and head and neck cancers
This will test whether a tiny implantable microdevice can safely and quickly deliver and screen multiple cancer drugs inside salivary gland and other head and neck tumors in patients scheduled for surgical removal.
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Phenotype-based Pain Guidance for Head and Neck Cancer-Related Pain (pilot)
This pilot test sees if tailoring pain treatment to a patient’s pain type can reduce head and neck cancer pain in adults who haven’t started cancer treatment yet.
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.