The HEADSpAcE Data Center: An international data and biospecimen resource for head and neck cancer translational research

Abstract

Head and neck cancer (HNC) comprises a heterogeneous group of malignancies with substantial variation in incidence, risk factors, and outcomes across populations. Existing studies are often limited by regional scope or lack integration of epidemiological, clinical, and molecular data, restricting the ability to investigate determinants of disease risk, diagnosis, and survival on a global scale. The HEADSpAcE Data Center was established to address these gaps by integrating data and biospecimens from multiple international studies and consortia across North America, South America, Europe, and the Eastern Mediterranean under a shared governance framework that defines future access and use of the resource as has been agreed upon by participating principal investigators. The resource currently includes over 27,000 participants from 18 countries, encompassing detailed demographic, lifestyle, clinical, and follow-up/outcome data, with linked biospecimens and molecular profiling. Cancer cases included are from the oral cavity, oropharynx, larynx, and hypopharynx. Participant recruitment spans the periods from 1991 to 2025. The Data Center incorporates standardized variables on risk factors (e.g., tobacco, alcohol, HPV), tumor characteristics, and disease outcomes, as well as detailed information on diagnostic pathways from the most recent recruitment. Molecular data include HPV-related assays, germline genotyping, targeted and/or genome-wide tumor sequencing, and transcriptomic tumor profiling. Biospecimens include blood-derived samples, oral samples and tumor tissues, with availability varying by region and study. By combining multi-level data within a harmonized framework, the HEADSpAcE Data Center provides a platform for large-scale analyses of HNC risk, diagnosis, and survival across populations. The resource is open to new centers wishing to contribute data and biospecimens to expand representation across regions and populations. Data access and contribution procedures are available at www.headspace.iarc.who.int.