Our Core Studies and Other Projects

The British Childhood Cancer Survivor Study (BCCSS) is the first national population-based study of survivors of childhood cancer to be undertaken in Britain which assesses a wide spectrum of possible adverse health outcomes of childhood cancer and its treatment.

It is based on an underlying cohort of 17981 individuals who were diagnosed with childhood cancer between 1940 and 1991 in Britain and survived at least 5 years.

The cohort was ascertained using the population-based National Registry of Childhood Cancer, maintained at the University of Oxford, which includes all neoplasms diagnosed in British residents under 15 years of age. The entire cohort is being used for studies of long-term survival and causes of deaths occurring subsequent to 5-year survival, as well as investigations of the incidence and aetiology of specific types of second primary neoplasms.

In September 2006 there were 15086 (83.9%) alive and aged at least 16 years, 115 (0.6%) alive and aged under 16 years and 2780 (15.5%) who have died subsequent to surviving at least 5 years. The study methodology for the BCCSS involves sending a self-completion postal questionnaire to each survivor aged at least 16 years via their primary care physician to obtain, among other things, measures of adverse health and social outcomes and family history information.

Crude measures of treatment are available from most individuals within the cohort. The general objectives are to obtain estimates of the risk of particular adverse health outcomes occurring among survivors and their offspring and to investigate variation of such risks in relation to several factors including types of childhood cancer and its treatment.

1. To investigate long-term survival and the risk of death subsequent to 5-year survival from specific causes in relation to type of childhood cancer and its treatment. In particular, to compare observed mortality from specific causes of deaths with that expected from the general population.
2. To determine the risks and causes of second primary neoplasms. Cohort studies will address absolute risks and nested case-control studies will address aetiological questions.
3. To investigate the risk of cardiac, pulmonary, renal, hepatic, intestinal and other major organ toxicity in relation to types of childhood cancer and its treatment.
4. To explore the fertility of survivors in relation to types of childhood cancer and its treatment. In particular, to evaluate the risk of premature menopause in specific subgroups of female survivors
5. To assess the risk of adverse outcomes of pregnancy, among female survivors and wives/partners of male survivors, in relation to type of childhood cancer and its treatment. Including recognised miscarriages, induced abortion, stillbirth, low birth weight and congenital anomaly.
6. To monitor the health of the cohort of offspring of survivors. In particular, to compare the observed numbers of deaths from specific causes and the incident number of specific types of cancer with the corresponding numbers expected from the general population.
7. To clarify aggregations of cancer in families affected by childhood cancer. In particular, compare observed numbers of cancers of specific types in first degree relatives with those expected from the general population.
8. To determine the extent of use of health services by survivors and compare it with that expected from the general population.
9. Compare the extent and quantity of smoking and drinking among survivors with that expected from the general population.
10. Compare the educational attainment and occupational status of survivors with those expected from the general population.
11. Compare the self-evaluated health status (SF-36) of survivors with that expected from the general population.
12. Compare the observed patterns of marriage among survivors with that expected from the general population.
13. Quantify the extent and nature of obstacles encountered by survivors in obtaining life and medical insurance.

Various documents relating to the study are available for further reading:

• Research Protocol 
• MALE Study Questionnaire 
• FEMALE Study Questionnaire 
• 1st Study Newsletter 
• 2nd Study Newsletter

The Department of Health, the National Institute for Health and Clinical Excellence and the National Cancer Research Institute have all identified a need and priority for accurate information concerning the risk of adverse health outcomes among survivors of cancer diagnosed in teenage and young adulthood.

A large population-based investigation addressing a wide spectrum of fatal and non-fatal adverse health outcomes will provide an evidence base of importance for: counselling, educating and empowering survivors; creating and updating guidelines for clinical follow-up; preparing “survivorship care plans”; educating health care professionals; evaluating proposals for future treatment protocols from a risk as well as benefit perspective; assessing potential recalls to clinic of subgroups at substantially increased risk; providing a basis for more detailed aetiological studies.

The objectives of the research are to establish a database of almost 300,000 individuals diagnosed with cancer aged 15 to 39 years, in England and Wales, between 1971 and 2006. This database would be used to investigate the observed and expected risks of: specific causes of death, specific types of subsequent primary cancer and specific types of non-cancer morbidity (including cardiovascular, pulmonary, urological, hepatic and endocrine conditions). Evidence for the cure of specific types of cancer would also be assessed.

Record linkages between the established database and the national death and cancer registries, the Hospital Episode Statistics (HES) for England, the Patient Episode Database for Wales (PEDW) in Wales and the Myocardial Ischaemia National Audit Project (MINAP) will be undertaken.

From such linkages it will be possible to identify subgroups of patients (defined in terms of type of cancer, age at treatment, calendar year of diagnosis, period of follow-up, attained age and sex) at a substantially increased risk of specific adverse health outcomes.

The study, funded by Cancer Research UK in 2010, will be the first comprehensive investigation of fatal and non-fatal serious adverse health outcomes of cancer treatment in teenagers and young adults and the population-based design and large sample size would undoubtedly lead to a landmark contribution.

This study was a cohort study of mortality and cancer incidence in UK oil refinery and petroleum distribution workers 1951-2016. 

This cohort was established on behalf of the Energy Institute. The cohort for analysis consists of over 45,000 petroleum distribution workers and oil refinery workers in the UK who were employed in the industry for at least 12 months between 1946 and 1974.

The main objective of the study is to examine the number and type of cancers diagnosed and causes of death in these workers, up to 2016, compared to the general population. We will investigate whether deaths and cancers experienced within this cohort might be related to occupational exposures. The Principal Investigator for this study is Professor Mike Hawkins and the main researcher is Dr Clare Frobisher.

More information on the study can be found in the study protocol and the privacy notice.

The latest reports published for the Energy Institute on this cohort are available here: on the oil refinery workers from 1951-2011.

Project title:

PanCare childhood and adolescent cancer Survivor care and Follow-up studies (PanCareSurFup)

This five-year programme grant from the European Commission for the first pan-European collaborative study of survivors of childhood and adolescent cancer was initiated in February 2011. It includes investigators from Austria, the Nordic countries, France, Germany, the Netherlands, Italy, Slovenia, Hungary and Switzerland. The broad objectives are:

1. Establish three adverse health outcome specific and retrospectively ascertained pan-European cohorts of survivors of childhood cancer within which the occurrence of late mortality, second malignant sarcomas and carcinomas, and cardiac events have been (or may be) systematically ascertained and validated. Focusing on carcinomas which are common in the general population after age 40 years and which are frequent among survivors including commonly observed digestive and genitourinary sites.
2. Undertake individual patient radiation dosimetry for individuals included within the nested case-control studies to obtain estimates of dose to the site of development of the adverse event and the corresponding site in the matched controls.
3. Estimate the absolute risk of each of these adverse health outcomes within the relevant cohort and compare observed and expected numbers of events where general population rates are available to enable the calculation of expected numbers. Of particular interest will be the comparison of observed and expected numbers among those aged over 40 years.
4. Execute three nested case-control studies of cardiac disease, second malignant sarcoma and second malignant carcinoma, respectively, and one cohort study of late mortality, occurring among survivors to determine the aspects of radiotherapy and type and dose of chemotherapy associated with increased risk.
5. Produce clinical follow-up guidelines for health care professionals, survivors and their families based on existing evidence and the results from this study in terms of the absolute risk available from the cohort studies and the relative risks in relation to risk factors from the case-control studies, as they become available. This includes issues related to transition from a paediatric to adult environment for on-going follow-up.
6. Establish partnerships between providers and survivor/parent groups to disseminate information about PanCareSurFup to the general public, to health professionals and survivor/parent groups; train health care professionals through conferences, workshops, booklets and web based information; empower and educate survivors to be as informed as possible concerning their long-term risks, and about general and specific health promotion measures that they can use to optimise their future well-being.

 For further information, please visit the PanCareSurFup website.

Gene-Rad-Risk is an international collaborative study of the joint influences of radiation and genotype on breast cancer risk and is funded by the European Union under the 6th Framework Programme.

The main objective of the study is to test whether mutations or polymorphisms in specific DNA repair genes, which were also associated with an increased risk of breast cancer, increase the risk of radiation induced breast cancer.

In addition to studying the possible interactions between radiation exposure and genes, a secondary objective will be to study the possible modifying effects of reproductive factors and cancer therapies other than radiation on the risk of radiation induced breast cancer.

The Centre for Childhood Cancer Survivor Studies organizes the British part of the study which involves approximately 350 female adult survivors of childhood cancer.

For further information, please read the following documents:

• Gene-Rad-Risk Study protocol 
• Questionnaire for telephone interview (Gene-Rad-Risk)

This is an observational cohort study being undertaken in collaboration with University Hospital Birmingham NHS Foundation Trust with funding from The Wellcome International Strategic Support Fund.

A cohort of over 85,000 solid transplant recipients, who received a solid organ transplant in England, between 1985 and 2015 has been identified from the UK Transplant Registry. Solid organ transplant patients are counselled regarding increased risk for cancer and it ranks as one of their biggest self-reported worries. However, epidemiology of cancer post transplantation remains poorly understood.

The cohort has been linked to the national cancer and death registries and secondary care data from the Hospital Episode Statistics database. A pseudonymised dataset has been made available for analysis by the research team at the University of Birmingham who will act as the Data Processor.

Further information on the study can be found in the Privacy Notice.