Published in:
Open Access
01-12-2014 | Study protocol
Establishing a large prospective clinical cohort in people with head and neck cancer as a biomedical resource: head and neck 5000
Authors:
Andrew Robert Ness, Andrea Waylen, Katrina Hurley, Mona Jeffreys, Chris Penfold, Miranda Pring, Sam Leary, Christine Allmark, Stu Toms, Susan Ring, Tim J Peters, Will Hollingworth, Helen Worthington, Chris Nutting, Sheila Fisher, Simon N Rogers, Steven J Thomas, The Head and Neck 5000 Study Team
Published in:
BMC Cancer
|
Issue 1/2014
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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.