UK Firefighters Cancer and Disease Registry
The main purpose of the UK Firefighters Cancer and Disease Registry (FCDR) is to develop a better understanding of the increased occurrence of cancers and diseases among firefighters and to identify the association between firefighter’s occupation and exposure to fire effluents and residues.
It is widely known that exposure to fire effluents, whether through inhalation, ingestion or dermal absorption, is a likely contributing factor for increased number of firefighters’ occupational diseases and cancers.
Research study objectives are:
- To obtain detailed knowledge of firefighter practise on an individual basis in relation to potential exposure.
- To identify the frequency and severity of the most common diseases and cancers suffered by firefighters.
- To correlate the incidence of disease with specific work practices.
- To provide robust evidence of any occupational diseases in firefighters in the UK.
- To offer preventative health screening, education and support that is specifically designed to protect firefighter’s health.
Every firefighter, both serving and retired, needs to be part of FCDR.
We need to hear from firefighters, the majority who have never received a cancer diagnosis, any who have been previously diagnosed with cancer and any who currently have cancer or other disease.
For the UK Serving and Retired Firefighters Cancer and Disease Registry
For the UK Fallen Firefighters Cancer and Disease Registry
In our earlier studies, over 4% of UK serving firefighters, who responded to the survey on fire contaminants, have already been diagnosed with cancer.
The questions in this Registry follow best practise across the globe. They were developed in the US and Canada where certain cancers are recognised as occupational diseases and presumptive legislation exists, so that if you contract one of the listed diseases you are automatically entitled to compensation. No such legislation currently covers firefighters in the UK.
Currently, the UK’s National Cancer Registry and Analysis Service is not able to provide any reliable data on the cancer incidence or mortality amongst firefighters.
Setting up the UK Firefighters Cancer and Disease Registry is the only way we can identify and keep track of all firefighters who have been diagnosed with the diseases and cancers as well as identify any association between firefighter’s occupation and exposure to fire carcinogens.
The UK Firefighters Cancer and Disease Registry is the systemic collection of data about firefighter’s characteristics, work patterns, exposure to fire effluents, and their health (diseases and cancers: how advanced it is, the treatment etc.).
The UK Firefighters Cancer and Disease Registry will provide critical information needed to protect firefighter’s health.
Particularly we would like to:
- Understand types, trends and variation in cancer survival (for example due to differences in geography, gender, age, etc.),
- Track the number of cancer cases to over time,
- Investigate the possible causes such as occupational exposure to fire toxins,
- Understand patterns of cancer diagnosis and how cancer patients are diagnosed,
- Identify international differences in cancer survival and identify factors that might explain the variation,
- Evaluate the risk of cancer among firefighters when compared to the rest of the UK population,
- Learn more about how certain protective measures may reduce the risk of cancer.
- Anna A Stec
- Philip Houldsworth
- Anthony Rowbottom
- Prof David Purser
- Taylor Wolffe
- Kathryn Dickens
- Louis Turrell
- Daniella Maritan – Thomson
- Anna Clinton
Your participation in this research project is entirely voluntary.
There is no direct health benefit to you from taking part in this research. But, by providing vital information about your own health, work experiences etc. you can play a critical role in helping us to learn more about cancer in the fire service and how it is related to work-place exposures.
If you do decide to take part in this registry, thank you.
Firefighters without a cancer diagnosis are just as critical as those who have received a diagnosis of cancer or any other disease.
We encourage anyone who has ever been a firefighter to fill in this Registry. We would like all firefighters to participate in this Registry, not just those who have been diagnosed with the cancer or any other illness. This includes all serving (volunteers, part-time etc.) and retired firefighters. There is no minimum service time required to register in the FCDR.
More responses means more data which is more useful, more important and more scientifically valid.
FCDR will be only successful if there is accurate and complete information. The completeness of the registry is most important when trying to understand things that only affect a small number of firefighters who responded to the Registry. For example: rare cancers or exposure to specific fire carcinogens or fuel.
Therefore, we need you to complete this registry so we can identify and record every cancer or disease, and improve monitoring of cancer incidents amongst firefighters.
Completion of a Firefighter Cancer and Disease Registry may take up to 40 minutes. We do understand it is a rather long registry, but it is the only way to ensure complete case ascertainment.
If you decide, for any reason, to give up in the middle of the questionnaire, you may return and complete it later.
Information provided by you will not be shared with your employer, the Fire Brigades Union or your Occupational Health service.
Information about health is sensitive, so by law it must be kept under the highest levels of security. FCDR data together with all other medical records is held on secure UCLan’s servers with tightly controlled and restricted access.
FCDR data together is held on secure UCLan’s servers with tightly controlled and restricted access.
We will remove identifiable information from the data we collect about you. After we remove all of the identifiers, we will place a code on the information. The code will be linked to your identity, but the link will be kept in a location that is separate from your study data. We will maintain your information on encrypted computers and access to the information will be limited to only members of the research team who need the access to properly conduct the study.
Obtained information and data will be protected to the fullest extent allowed by law. Information provided by you will not be shared with your employer, the Fire Brigades Union, your Occupational Health service.
All records and data will be presented anonymously.
Only members of the UCLan research team and clinicians working at Royal Preston Hospital will access your records.
UCLan’s team collects, stores and manages obtained data. They will analyse the possible causes and factors contributing to cancers or other illnesses (work characteristics, exposure to fire toxins etc).
Clinicians working at Royal Preston Hospital will access medical records, process and report data directly linked to the cancer diagnosis and treatment.
Both teams will collect, combine, and analyse data, on an anonymous bases, to provide critical information needed to protect firefighter’s health.
FCDR will collect personal information (name, age, gender, date of birth). You will be asked about your work characteristics, frequency of the exposures to fire toxins, your lifestyle and health. Additionally, you will be asked about your cancer diagnosis and treatment.
Information from the FCDR will be used to create a comprehensive database of firefighter’s incidence and prevalence of cancers and other diseases. It will provide critical information needed to protect your and other firefighter’s health. Particularly we would like to use obtained data to track the number of cancer cases to over time; evaluate the risk of cancer among firefighters when compared to the rest of the UK population; investigate the possible cancer causes linked to firefighter’s work (exposure to fire toxins).
By obtaining your medical records and data and then merging them we can build a complete picture of firefighter’s incidence and prevalence of cancers and other diseases.
You can find out more about how we use your information:
- on the NHS' Patient information and health and care research page
- in the NHS' leaflet about how health researchers use patient information
- by asking one of the research team
- by sending an email to DPFOIA@uclan.ac.uk
- by ringing us on (44) 01772 892561
Information from the FCDR will be used to create a comprehensive database of firefighter’s incidence and prevalence of cancers and other diseases. It will provide critical information needed to protect your and other firefighter’s health. Particularly we would like to use obtained data to track the number of cancer cases to over time; evaluate the risk of cancer among firefighters when compared to the rest of the UK population; investigate the possible cancer causes linked to firefighter’s work (exposure to fire toxins).
Collected information will be analysed from few different perspectives:
- Firefighter’s demographics: name, age, gender, race, ethnicity, etc.,
- Firefighter’s work characteristics: role, type and tasks carried out at work, frequency of the fire attendance, etc.,
- Fire toxins exposures: frequency and type, dermal, inhalation and ingestion exposure, PPE and personal contamination etc.,
- Cancer or disease characteristics: biological and clinical aspects of the malignancy, types, stage and age at diagnosis, impact of early detection etc.,
- Cancer or disease treatment: type and duration of the treatment, impact of early treatment etc.,
- Cancer incidence trends and variations: to understand contributing factors mentioned above,
- Statistical data analysis: evaluate the risk of cancer among firefighters when compared to the rest of the UK population.
All obtained data will be presented anonymously. The overall findings from the FCDR will be shared with the fire service, scientific community, and the public. Information will be disseminated in the form of fact sheets, peer-reviewed journals or academic conferences, reports, media, and websites.
You are free to withdraw from the study at any time, without giving a reason. A decision not to take part, or a decision to withdraw at any time, will not affect your employment or any health care you receive. However, once you filled the FCDR, we will keep information you have already provided.
If you choose to stop sharing medical records related to your illness, then please tell us and we will stop using it.
Withdrawal from the study can be done by expressing your wish in an email to the following email address: FCDR@uclan.ac.uk
If you have any questions about this project or FCDR you can get more information by writing to: FCDR@uclan.ac.uk
or contact directly Prof Anna A Stec: aastec@uclan.ac.uk
UCLan Professor honoured by Fire Brigades Union for life-saving research
The Fire Brigades Union (FBU) has honoured University of Central Lancashire (UCLan) Professor Anna Stec for her independent research behind its campaign to help firefighters protect themselves and others from harmful contaminants.