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Information for Researchers

Here you can find details of the study and links to the current study documents, including participant questionnaires and data capture forms. 


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Study objectives

The overall objective of the study was to recruit a clinical cohort of 5,000 people with head & neck cancer. The initial plan was to follow up the cohort for two years but this has been extended. The Head & Neck 5000 follow-up study has collected follow-up data for a further 3 – 5 years and we will continue to update information through linkage to national databases until at least 2025. A 10 year questionnaire is being sent out in 2024.

Specifically, the initial objectives were to:

  • Compare morbidity and mortality outcomes across different centres.
  • Compare quality of life outcomes across different centres.
  • Describe the individual economic cost of head and neck cancer care.
  • Identify prognostic indicators for head and neck cancer.
  • Create a resource for translational and applied research in head and neck cancer.

We successfully created a clinical cohort of over 5,000 people with head & neck cancer that we are now following up. We have described the centralised multi-disciplinary service in the UK. However, preliminary analysis suggests there is little variation in outcome between centres so we are unlikely to be able to evaluate the impact of centralisation on outcome. We have established an important resource for translational and applied research that is being widely used and that making important contributions to aetiological and prognostic research.


Baseline measures

Each participant in the study was asked to provide research staff with a small amount of blood and saliva, and to complete a series of questionnaires.  At the beginning of their treatment process they were asked to fill in questionnaires about lifestyle, sexual history, their experiences of living with head and neck cancer, and how it had affected them physically, socially and psychologically. Data was also collected from their medical notes.


Follow up

Questionnaires were sent out to participants 4 months and 12 months after enrolment in the study and further data was collected from the medical notes.

Further follow-up took place at 3 – 5 years after consent. The follow-up involved a questionnaire to participants and data collection from the medical notes.

A 10 year questionnaire will be sent out in 2024.


Using the resource

Head and Neck 5000 is run as a resource that can be used by the research community.

If you are not sure whether your study requires separate ethical approval please contact the Head & Neck 5000 team.

The documents that you need when applying for a dataset from us can be found below.

Tier 1 Data Manual v3.0

This document provides further detail on the study, as well as information about all currently available variables

Costing Policy

This document provides detail on the costings for the supply of datasets


Data Access Policy

This document provides detail on the agreed policy for the supply of datasets.


Paper Checklist

This document provides a checklist, the actions detailed must be confirmed to have been completed prior to any publication


Research Proposal Form

Please complete this online form to give details of your application to use our resource



Study materials

Below you will find the latest versions of the study documents. If you would like to see the older versions of any of the documents listed please contact the study team.

Study Details


Four Month

Twelve Month

3-5 Year Follow-up


Protocol Data Capture Form  Data Capture Form Data Capture Form Protocol Mortality Form
Inclusion & Exclusion Criteria Questionnaire Questionnaire Questionnaire Patient Information Leaflet
Patient Information Sheet Questionnaire (Bristol)  Questionnaire (Bristol) Questionnaire (Bristol) Data Capture Form
Consent Form About You Questionnaire  Toxicity Scale Data Capture Form Completion Guidelines
Data capture form completion guidelines Sexual History Questionnaire Questionnaire