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Information for Participants

Welcome to the Head and Neck 5000 website. This is where you can find information and receive any news and updates from the study.

We are always interested in the views of our participants in the study, if you would like to suggest areas for research or be involved in the next funding project please feel free to get in touch.

If you would like to read the full study protocol you are welcome to refer to the Information for Researchers page, where you will find a comprehensive list of study documents and publications.

Thank you for your participation and interest in the study.


On this page


Study aims and objectives

The study initially aimed to see how centralising head and neck cancer treatment affected patients’ outcomes. It also aimed to create a large database of information about people with head and neck cancer. 

The main goal of the study was to recruit 5,000 people with head and neck cancer and track their progress over time. 

Specifically, we wanted to: 

  • Compare how patients fared in different treatment centres. 
  • Look at how their quality of life was affected in these centres. 
  • See how much money it cost to treat head and neck cancer. 
  • Find out what factors affected the prognosis of head and neck cancer. 
  • Build a resource that could be used for further research in this area. 

We recruited over 5,000 people with head and neck cancer and followed them up for a year and again at 3 to 5 years. We are now in the process of conducting our 10 year questionnaire follow-up. 

We also described how head and neck cancer treatment was organized in the UK. However, we found that there wasn’t much difference between different treatment centres, and therefore couldn’t really tell if centralising treatment has made a big difference in how well patients do. Nevertheless, the information we have collected is helping a lot with research into the causes, development, and outcomes of head and neck cancer. 


Key findings

Risk factors and survival in head and neck cancer

Various projects have looked into how different factors affect survival in head and neck cancer, including smoking, alcohol consumption, other health conditions (known as co-morbidities), diet, and feelings of depression. Here’s what we found:

  • Both current smokers and ex-smokers have a higher risk of dying compared to those who have never smoked.
  • Drinking alcohol is a known risk factor for getting head and neck cancer, but we haven’t found a link between alcohol consumption and survival.
  • Having other medical conditions along with head and neck cancer is a strong predictor of survival. This means people with fewer other illnesses are more likely to survive longer after being diagnosed.
  • It’s not clear whether eating fruits and vegetables affects survival in head and neck cancer. It’s hard to figure out if diet has an effect or if other factors like smoking and drinking play a bigger role.
  • There’s some evidence that people who were suffering with depression before their treatment started might have a higher risk of dying.
Genetic studies

Several projects have looked at genetic data, and we’ve collaborated with other studies to have enough data to spot any genetic influences on head and neck cancer.

Here’s what we found:

  • We discovered seven new genetic spots linked to oral cavity and pharynx cancers. These spots are places in the genes where we can find markers linked to cancer. For cancers in the oropharynx, there’s a strong genetic signal in cancers that are positive for the human papillomavirus (HPV).
  • Taking vitamin D supplements doesn’t seem to prevent head and neck cancers.
  • We looked at the link between telomere length (a genetic structure) and survival in head and neck cancer and lung cancer. We found a link in a type of lung cancer but not in head and neck cancers.
  • Indicators of chronic inflammation were linked to head and neck cancer and survival.
Descriptive studies

Various projects have described the type of tumours and how they behave:

  • Nasal cavity cancer is rare compared to other head and neck cancers. We described how the disease behaves and the outcomes of treatment. More studies are needed to see if different treatments affect survival.
  • We described the changing trends in head and neck cancer, especially looking at cancer in the larynx, oropharynx, and oral cavity.
  • Changes in smoking and drinking habits after a head and neck cancer diagnosis vary. Smokers at diagnosis were more likely to smoke less a year later, but non-smokers at diagnosis were more likely to start smoking a year later.
International collaborations

Head and Neck 5000 is part of ongoing collaborations with several large international research teams. We’re sharing data, blood, and tissue samples to increase the chances of finding factors that affect outcomes.

  • HEADSpAcE involves 15 centres across Europe and South America. They’re studying factors that affect late diagnosis and poor outcomes in head and neck cancer.
  • The Voyager study brings together several large international research studies on oral and oropharyngeal cancer. They’re looking at how genetic changes contribute to cancer development.
  • The INHANCE group is focused on genetic and environmental risk factors in head and neck cancer.



Privacy and Confidentiality

Keeping your information private in the study is really important. We’ll handle all your information carefully and keep it confidential, following all ethical and legal practice. Only the people authorised to work on the study will be able to see your personal data. Each person who joins the study will get a unique number that we’ll use instead of names when collecting and connecting data. We won’t publish any information in a way that could identify anyone. Joining the study is your choice, and you can leave at any time, even if you’ve already agreed to take part.

Initial Purpose of the Study

The main reason we started the Head and Neck 5000 study was to see if centralising head and neck cancer services in the UK has been successful.

Who runs and who funds the study?

The study is being run by University Hospitals Bristol and Weston NHS Trust and the Bristol Dental School at the University of Bristol. Originally, it was funded by a grant from the UK National Institute for Health Research. Later on, we got funding from other sources, such as Cancer Research UK and UHBW’s Research and Innovation Department.  Our 10 year follow-up questionnaire is being funded by a grant from Cancer Research UK.

Study Review

We’ve had lots of experts check our study, including doctors, scientists, and people affected by head and neck cancer. It’s also been approved by an NHS Research Ethics Committee. To participate, patients needed to fill out some private questionnaires and might have provided samples of blood and saliva. We also looked at health records, but only if we had consent to do so. Additionally, we collected information about anyone in the study who passed away during the research.

What does taking part in the study involve?

To participate, patients needed to fill out some questionnaires and if happy to they gave samples of blood and saliva. Samples were also collected of the cancer tissue. We also looked at health records, but only if we had consent to do so. Additionally, we collect information about anyone in the study who passed away during the research.

Privacy Protection Measures

Your data and samples have a unique study number on them, not your name, so nobody can tell they’re yours. We keep all the data and samples safe and separate from any information that could identify you. Only a few trusted people who are part of the study team have access to this information. No information that could be used to identify you or your family will be included in any report on the results of the study.

Data Handling and Study Results

We’ll use the information and samples we collect to learn more about head and neck cancer. After the study has finished, we might want to keep the data and samples for future research. We’ll share what we find in medical journals, conferences, and with groups and charities who help people with head and neck cancer. The results will also be posted on this website.

Who do I contact if I have more questions about the study?

If you have any questions or concerns about the study, you can get in touch with our research team.

Can I withdraw from the study even though it has started?

If you decide that you don’t want to be part of the study anymore, you can let us know at anytime. Please get in touch with us or you can ring us on 0117 342 9531.

How long will we keep your data?

We’ll keep all the data and samples until 31st March 2026.


How we use your data

This section explains how we store and use the data for the study. If you have any questions about this, please contact the study team using the contact us page, or you can call us on 0117 3429531.

General Information

University Hospitals Bristol and Weston NHS Foundation Trust is the sponsor for this study based in the United Kingdom. The sponsor is the organisation that takes on the legal responsibility for running a research study.

We use information from you and your medical records for this study. The University Hospitals Bristol and Weston work closely with the University of Bristol on this study, and both organisations act as joint data controllers and joint data processors. This means both organisations are responsible for looking after your information and using it properly. Staff from both organisations work with the study data, but any information containing your name and NHS number is kept at University Hospitals Bristol and Weston. Contact details for the Data Protection Officers from both organisations are listed below.

The Head and Neck 5000 study will keep identifiable information about you until 31st March 2026.

The lawful basis for processing your personal information for the Head and Neck 5000 study is the General Data Protection Regulation (GDPR) Article 6(1)(e) and Article 0(2)(j), allowing processing of personal data for medical research purposes.

As an NHS organisation, University Hospitals Bristol and Weston use personally-identifiable information to conduct research to improve health, care, and services. We have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change, or move your information are limited, as we need to manage your information in specific ways for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

Health and care research should serve the public interest, which means we have to demonstrate that our research serves the interests of society as a whole. We follow the UK Policy Framework for Health and Social Care Research.

If you wish to raise a complaint about how we have handled your personal data, you can contact the study team or our Data Protection Officer, who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data unlawfully, you can complain to the Information Commissioner’s Office (ICO).

Details of the University Hospitals Bristol and Weston Data Protection Officer can be found here.

Details of the University of Bristol Data Protection Officer can be found here.

You can also find information on the use of patient data in research on the Health Regulatory Authority website here.

Data Storage

The identifiers that we hold are your:

  • Name
  • Initials
  • Postal address
  • Email address (if you have sent us this)
  • Date of birth
  • NHS number

People will use this information to do the research or to check your records to make sure that the research is being done properly. People who do not need to know who you are will not be able to see your name or contact details. Your data is held under the Head and Neck 5000 study number instead.

We will keep all information about you safe and secure.

Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study.

  • You can stop being part of the study at any time, without giving a reason, but we will keep information about you that we already have.
  • If you choose to stop taking part in the study, we would like to continue collecting information about your health from central NHS records. If you do not want this to happen, please tell us and we will stop.
  • We need to manage your records in specific ways for the research to be reliable. This means that we won’t be able to let you see or change the data we hold about you.
Sharing and processing of data

When you agree to take part in a research study like Head and Neck 5000, information about your health and care may be provided to researchers running other research studies both within this organisation and in other organisations. These organisations may be universities, NHS organisations, or companies involved in health care research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research. This information will not identify you and will not be combined with other information in a way that could identify you. It will only be used for the purpose of health and care research and cannot be used to contact you or affect your care. It will not be used to make decisions about future services available to you, such as insurance.

Linkage to NHS digital and other organisations

We would like to update our statements in the consent material about the sharing and processing of your personal data and the role of NHS England (previously the NHS Information Centre and NHS Digital) in the study.

If you consented to linkage with national databases, your NHS Number, initials, and date of birth have been sent to NHS England through their secure upload system. NHS England provides updates to the study relating to your health status, notification if you die, and if you died, the recorded cause and date of death. The data returned to us includes civil registration data supplied by NHS England on behalf of the Office for National Statistics. This information updates the data held by the study; it ensures that members of the study are not contacted inappropriately, and the data is used for the study research.

You can opt out of linkage to NHS England if you wish to do so. Opting out will not affect your healthcare. If you opt out of the linkage to NHS England, you can still remain in other parts of the study like questionnaires.  If you would like to opt out of any aspect of this study, please contact us.

Automated decision-making and profiling

Automated decision-making is the process of making a decision by automated means without any human involvement. Profiling is a way of analysing aspects of an individual’s personality, behaviour, interests, and habits to make predictions or decisions about them. In the Head and Neck 5000 study, we do not use automated decision-making or profiling. We do not link the data we collect back to individual identifiable data, and we do not analyse or report our findings at the individual level.