Establishing a large prospective clinical cohort in people with head and neck cancer as a biomedical resource: head and neck 5000

AR Ness, A Waylen, K Hurley, M Jeffreys, C Penfold, M Pring, S Leary, C Allmark, S Toms, S Ring, TJ Peters, W Hollingworth, H Worthington, C Nutting, S Fisher, Simon N Rogers, SJ Thomas

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    Abstract

    Background: Head and neck cancer is an important cause of ill health. Survival appears to be improving but the reasons for this are unclear. They could include evolving aetiology, modifications in care, improvements in treatment or changes in lifestyle behaviour. Observational studies are required to explore survival trends and identify outcome predictors. Methods: We are identifying people with a new diagnosis of head and neck cancer. We obtain consent that includes agreement to collect longitudinal data, store samples and record linkage. Prior to treatment we give participants three questionnaires on health and lifestyle, quality of life and sexual history. We collect blood and saliva samples, complete a clinical data capture form and request a formalin fixed tissue sample. At four and twelve months we complete further data capture forms and send participants further quality of life questionnaires. Discussion: This large clinical cohort of people with head and neck cancer brings together clinical data, patient-reported outcomes and biological samples in a single co-ordinated resource for translational and prognostic research.
    Original languageEnglish
    Pages (from-to)973
    JournalBMC Cancer
    Volume14
    Issue number1
    Early online date17 Dec 2014
    DOIs
    Publication statusPublished - 17 Dec 2014

    Keywords

    • Data Collection
    • Head and Neck Neoplasms/blood
    • Humans
    • Informed Consent
    • Life Style
    • Longitudinal Studies
    • Medical Record Linkage
    • Patient Selection
    • Prognosis
    • Prospective Studies
    • Quality of Life
    • Sexual Behavior
    • Surveys and Questionnaires
    • Translational Medical Research
    • United Kingdom

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  • Cite this

    Ness, AR., Waylen, A., Hurley, K., Jeffreys, M., Penfold, C., Pring, M., Leary, S., Allmark, C., Toms, S., Ring, S., Peters, TJ., Hollingworth, W., Worthington, H., Nutting, C., Fisher, S., Rogers, S. N., & Thomas, SJ. (2014). Establishing a large prospective clinical cohort in people with head and neck cancer as a biomedical resource: head and neck 5000. BMC Cancer, 14(1), 973. https://doi.org/10.1186/1471-2407-14-973