The Head and Neck Registry of the European Reference Network on Rare Adult Solid Cancers

Launched by FONDAZIONE IRCCS ISTITUTO NAZIONALE DEI TUMORI, MILANO · Aug 1, 2022

Keywords

ClinConnect Summary

The Head and Neck Registry is a clinical trial focused on understanding rare types of head and neck cancers, such as nasopharynx cancer, nasal cavity cancer, and salivary gland cancer. The goal of this study is to collect information that can help researchers learn about how these cancers develop, what affects patients' chances of recovery, and how well different treatments work. By gathering data from various healthcare providers and existing databases, the registry aims to improve the quality of care for patients with these rare cancers.

To participate in this study, you must be an adult (18 years or older) diagnosed with specific types of epithelial tumors in the head and neck region. This includes various cancers of the nasopharynx, nasal cavity, salivary glands, and middle ear. Participants can be at any stage of their cancer journey, whether newly diagnosed or currently receiving treatment. Throughout the process, your personal information will be kept private, and healthcare providers will ensure that everything follows strict privacy laws. By joining this registry, you will be contributing to important research that could benefit future patients with these rare cancers.

Gender

ALL

Eligibility 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)