Registry for rare head and neck cancers in Europe
The Observational Clinical Registry of the European Reference Network on Rare Adult Solid Cancers: the Protocol for the Rare Head and Neck Cancers
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 |
|---|---|
| Enrollment | 13600 (estimated) |
| Ages | 18 Years and up |
| Sex | All |
| Sponsor | Fondazione IRCCS Istituto Nazionale dei Tumori, Milano Academic / other |
| Locations | 10 sites (Brno, Brno and 9 other locations) |
| Trial ID | NCT05483374 on ClinicalTrials.gov |
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.
Who should consider this trial
Good fit: Ideal candidates include adults aged 18 and older diagnosed with specific rare epithelial tumors of the head and neck.
Not a fit: Patients with common head and neck cancers or those under 18 years old may not benefit from this registry.
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 performed: Other registries for rare cancers have shown promise in improving patient care and outcomes, indicating that this approach could be beneficial.
Eligibility criteria
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 this trial is running
Brno, Brno and 9 other locations
- Masaryk Memorial Cancer Institute — Brno, Brno, Czechia (Not_yet_recruiting)
- University Hospital Essen — Essen, Hesse, Germany (Not_yet_recruiting)
- 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)
- Nuovo Ospedale di Prato - S. Stefano — Prato, Prato, Italy (Not_yet_recruiting)
- IRCCS Istituto Nazionale Tumori Regina Elena — Roma, Roma, Italy (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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.