Alexander J Stratigos1, Maria Concetta Fargnoli2, Arcangela De Nicolo3, Ketty Peris4, Susana Puig5,6,7, Efthymia Soura1, Chiara Menin8, Donato Calista9, Paola Ghiorzo10, Mario Mandala11, Daniela Massi12, Monica Rodolfo13, Laura Del Regno4, Irene Stefanaki1, Helen Gogas14, Veronique Bataille15, Margaret A Tucker16, David Whiteman17, Eduardo Nagore18, Maria Teresa Landi16. 1. First Department of Dermatology, National and Kapodistrian University of Athens School of Medicine, Andreas Sygros Hospital, Athens, Greece. 2. Department of Dermatology, University of L'Aquila, L'Aquila, Italy. 3. Cancer Genomics Program, Veneto Institute of Oncology IOV - IRCCS, Padua, Italy. 4. Institute of Dermatology, Catholic University, Rome, Italy. 5. Dermatology Department, Melanoma Unit, Hospital Clinic de Barcelona, Universitat de Barcelona, Barcelona, Spain. 6. Instituto de Investigacion Biomedica August Pi i Sunyer (IDIBAPS), Barcelona, Spain. 7. Centro de Investigación Biomédica en Red de Enfermedades Raras (CIBERER), Barcelona, Spain. 8. Immunology and Diagnostic Molecular Oncology Unit, Veneto Institute of Oncology IOV - IRCCS, Padua, Italy. 9. Dermatology Unit, Maurizio Bufalini Hospital, Cesena, Italy. 10. Department of Internal Medicine and Medical Specialties, University of Genoa and Genetics of Rare Cancers, University Hospital Policlinico San Martino-IRCCS, Genoa, Italy. 11. Unit of Melanoma, Department of Oncology and Hematology, Papa Giovanni XXIII Cancer Center Hospital, Bergamo, Italy. 12. Department of Surgery and Translational Medicine, University of Florence, Florence, Italy. 13. Immunotherapy Unit, Department of Experimental Oncology and Molecular Medicine, Fondazione IRCCS Istituto Nazionale dei Tumori, Milan, Italy. 14. Department of Internal Medicine, Laikon Hospital, National and Kapodistrian University of Athens School of Medicine, Athens, Greece. 15. Department of Twin Research and Genetic Epidemiology, Kings College, London, UK. 16. Human Genetics Program, Division of Cancer Epidemiology and Genetics, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA. 17. Population Health Department, QIMR Berghofer Medical Research Institute, Brisbane, Qld, Australia. 18. Department of Dermatology, Instituto Valenciano de Oncología, València, Spain.
Abstract
BACKGROUND: Many melanoma observational studies have been carried out across different countries and geographic areas using heterogeneous assessments of epidemiologic risk factors and clinical variables. AIM: To develop a consensus questionnaire to standardize epidemiologic and clinical data collection for melanoma risk assessment. METHODS: We used a stepwise strategy that included: compilation of variables from case-control datasets collected at various centres of the MelaNostrum Consortium; integration of variables from published case-control studies; consensus discussion of the collected items by MelaNostrum members; revision by independent experts; addition of online tools and image-based charts; questionnaire testing across centres and generation of a final draft. RESULTS: We developed a core consensus questionnaire (MelanoQ) that includes four separate sections: A. general and demographic data; B. phenotypic and ultraviolet radiation exposure risk factors and lifestyle habits; C. clinical examination, medical and family history; and D. diagnostic data on melanoma (cases only). Accompanying online tools, informative tables, and image-based charts aid standardization. Different subsections of the questionnaire are designed for self-administration, patient interviews performed by a physician or study nurse, and data collection from medical records. CONCLUSIONS: The MelanoQ questionnaire is a useful tool for the collection and standardization of epidemiologic and clinical data across different studies, centres, cultures and languages. This will expedite ongoing efforts to compile high-quality data for pooled analyses or meta-analyses and offer a solid base for the design of clinical, epidemiologic and translational studies on melanoma.
BACKGROUND: Many melanoma observational studies have been carried out across different countries and geographic areas using heterogeneous assessments of epidemiologic risk factors and clinical variables. AIM: To develop a consensus questionnaire to standardize epidemiologic and clinical data collection for melanoma risk assessment. METHODS: We used a stepwise strategy that included: compilation of variables from case-control datasets collected at various centres of the MelaNostrum Consortium; integration of variables from published case-control studies; consensus discussion of the collected items by MelaNostrum members; revision by independent experts; addition of online tools and image-based charts; questionnaire testing across centres and generation of a final draft. RESULTS: We developed a core consensus questionnaire (MelanoQ) that includes four separate sections: A. general and demographic data; B. phenotypic and ultraviolet radiation exposure risk factors and lifestyle habits; C. clinical examination, medical and family history; and D. diagnostic data on melanoma (cases only). Accompanying online tools, informative tables, and image-based charts aid standardization. Different subsections of the questionnaire are designed for self-administration, patient interviews performed by a physician or study nurse, and data collection from medical records. CONCLUSIONS: The MelanoQ questionnaire is a useful tool for the collection and standardization of epidemiologic and clinical data across different studies, centres, cultures and languages. This will expedite ongoing efforts to compile high-quality data for pooled analyses or meta-analyses and offer a solid base for the design of clinical, epidemiologic and translational studies on melanoma.
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