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

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.

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Publication Details

Journal
Open Research Europe
Published
2026-10-07
DOI
https://doi.org/10.12688/openreseurope.24719.1
Citations
1
Primary Topic
Head and Neck Cancer Studies
Type
article
Field-Weighted Citation Impact
7.20
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article

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

H. Riveros, Sandra Zeidler, Miranda Pring, Shahid Pervez et al.
1 citations
Open Research Europe
Head and Neck Cancer Studies
7.20
article

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

H. Riveros, Sandra Zeidler, Miranda Pring, Shahid Pervez, Arantes Lídia, Marta Vilensky, Paula Andrea Rodríguez-Urrego, Wolfgang Ahrens, Ana Carolina de Carvalho, Ivana Holcátová, Pierre‐Eric Roux, Lorenzo Richardi, Shama Virani, Amélie Chabrier, Clóvis Antônio Lopes Pinto, Grant Creaney, Max Robinson, Valérie Gaborieau, Tom Dudding, Cristina Canova, Luis Felipe Ribeiro, Jens Peter Klußmann, Pierre Saintigny, Ariana Znaor, Areti Lagiou, Aude Bardot, Tim Waterboer, Kazem Zendehdel, Παγώνα Λάγιου, Laura Mendoza, Jerry Polesel, José Carlos de Oliveira, Laia Alemany, Andrew Olshan, Sandra Perdomo, David Conway, Brenda Diergaarde, Geoffrey Liu, Deborah Saunders, Claire Healy, Rayjean Hung, Cecilia Cuffini, Mauricio Cuello, Silvia Lopez de Blanc, Paul Brennan, Shaymaa AlWaheidi, Louise McNeilage, Evandro de Souza, Maria Paula Curado, Stacey Santi, David Hayes
article en
1 citations

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.

Open Research EuropeVol. 6
Université Claude Bernard Lyon 1 (FR), University of North Carolina at Chapel Hill (US), University of Padua (IT), University of Tennessee Health Science Center (US), Universidad Nacional de Córdoba (AR), German Cancer Research Center (DE), University of Cologne (DE), National and Kapodistrian University of Athens (GR), Trinity College Dublin (IE), Lunenfeld-Tanenbaum Research Institute (CA), Charles University (CZ), Heidelberg University (DE), Aga Khan University Hospital Nairobi (KE), University Of Bristol Dental Hospital (GB), Instituto de Salud Carlos III (ES), Newcastle upon Tyne Hospitals NHS Foundation Trust (GB), Bellvitge University Hospital (ES), Princess Margaret Cancer Centre (CA), Health Sciences North (CA), Aga Khan University Hospital (PK), University of Bristol (GB), Azienda Ospedaliera Citta' della Salute e della Scienza di Torino (IT), Hospital de Câncer de Barretos (BR), University of West Attica (GR), University Hospital in Motol (CZ), Instituto de Investigaciones en Ciencias de la Salud (AR), Centre Léon Bérard (FR), Institut Català d'Oncologia (ES), National Institute Of Hygiene And Epidemiology (VN), Hospital Araújo Jorge (BR), Leibniz Institute for Prevention Research and Epidemiology - BIPS (DE), Public Health Ontario (CA), Department of Medical Sciences (BY), UPMC Hillman Cancer Center (US), Centro di Riferimento Oncologico (IT), Fundación Santa Fe de Bogotá (CO), Dublin Dental University Hospital (IE), Instituto Nacional de Câncer - INCA (BR), Hospital de Clínicas (UY), Centre international de recherche sur le cancer (FR), Universidade Federal do Espírito Santo (BR), Cordoba University (US), Tehran University of Medical Sciences (IR), University of Glasgow (GB), NOSM University (CA), Universidad Nacional de Asunción (PY)
Good health and well-being
Openalex Percentile: Top 3%
Head and Neck Cancer Studies
7.20
DOIOpen Access PDFOpenAlex
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