Rare Head and Neck
Cancer Registry

Cancer care for head and neck cancers is complex in particular for the rare ones. Knowledge is limited, diseases are complex and often need multidisciplinary approach, including surgery, radiation, and systemic treatments. Patients tend to be older, to have comorbidities and less social support. Moreover, while most head and neck cancers are predominantly squamous cell carcinomas, salivary gland tumors include more than 20 distinct histological subtypes. Thus, heterogeneity adds complexity to the rarity.

Against this background, the EURACAN registry on rare head and neck cancers was set up with the following objectives:

to help describe the natural history of rare head and neck cancers
to evaluate factors that influence prognosis
to assess treatment effectiveness
to measure indicators of quality of care.

The head and neck registry was developed as a prospective registry collecting data from 2021 onwards, with the chance to admit patients with year of diagnosis dating max 3 years back (January 2018). All the new HCPs can contribute with the patients diagnosed the same year that the HCP joins the registry. Additionally, it is possible to include patients currently in follow-up at the HCP, whose diagnosisdates back no more than two years, in the same year the HCP joins the registry.

Head & Neck Codebook (available soon)Head & Neck Protocol

Registry parameters

Registry inclusion criteria

The registry report serves as a valuable resource for analysing trends, guiding clinical decisions, and supporting ongoing research efforts.

Registry Inclusion Criteria

Site and Histology Inclusion Criteria

Patient protection

Personal data will be recorded and stored in pseudonymized format. In the federated model this solution will enable data sharing among multiple organizations without identifiable data leaving the HCP.

All parties involved in registry development will maintain strict confidentiality to ensure that neither personal privacy nor the privacy of the families of patients participating in the registries is violated. Data will be processed exclusively by authorized personnel participating in development of the EURACAN registry (a data processor will be identified at each HCP involved). Access to computer systems and the premises where they are kept will be controlled by appropriate security measures which comply with privacy regulation requirements. The processing of the personal data of patients taking part in the EURACAN registry, and specifically in relation to consent-related data, will comply with local privacy legislation and the General Data Protection Regulation 2016/679 (GDPR) of the European Union.

The registry protocol will be submitted to the ethics committees (EC) of the HCPs involved. Furthermore, the ECs of the HCP involved will authorize in advance any research carried out using EURACAN registry data.

Information sheet

informed consents for clinical data

biological samples

Participating centres

The aim of the registry is to collect data on all patients treated or followed up for a rare adult solid tumour at the HCPs of the ERN EURACAN, at non-EURACAN expert HCPs, or at national and/or regional clinical networks in European and non-European countries. As of November 2020, there are 73 EURACAN HCPs located in 17 European countries, including Great Britain.

Participating centers PDF

Registry report

To access your latest registry report, please click the link below. The report contains important details and updates relevant to your account.

Discover (soon available)