The Generations Study

The Generations Study is a longitudinal cohort study established in 2004 involving 110,000 adult women living across the UK. The cohort collects extensive high-quality data to study the continuum of breast cancer, from causes to outcomes. Through this research we are learning how to prevent breast cancer, detect it early and improve quality of life and survival after diagnosis.

More than 110,000 women were recruited from across the UK from 2004 to 2011. The study collects extensive, high-quality data through participant recruitment and follow up questionnaires; blood samples; NHS electronic medical records, biopsy material and medical imaging; and analyses of blood, tissue and urine specimens. For more details or for Data Access Requests, please visit the Generations Study Website.

Professors Amy Berrington and Montserrat Garcia-Closas are the Principal Investigators of the Generations Study. Other senior researchers include Professor Olivia Fletcher and Dr Michael Jones. The study team includes epidemiologists, biostatisticians, data scientists, laboratory scientists, data engineers, data managers, and scientific administrators.

The study is supported by a partnership between The Institute of Cancer Research and Breast Cancer Now.

Scientific aims

The scientific goal is to understand the continuum of breast cancer, from causes to outcomes. In addition, the study can help understand the causes and prognosis of other cancers and diseases in women.

Research by the study team and collaborations with thousands of UK and international researchers has resulted in more than 100 scientific publications. This work has contributed to a better understanding of genetic, reproductive, behavioural and environmental causes of breast cancer. In addition, it has shown how integration of these factors into multimodal risk models substantially improves our ability to identify of women at high risk for developing breast cancer.

Current research priorities include:

• Better Breast Cancer Risk Tools: improve tools for predicting breast cancer risk by adding the latest discoveries like genetic scores, AI analyses of mammograms and social and environmental factors. This will help women receive more personalised and effective care.
• Lifestyle changes and Breast Cancer Prevention: investigate how changes in lifestyle such as increasing physical activity can reduce the risk of breast cancer and improve survival after a breast cancer diagnosis. This will help women make informed choices to protect their health.
• AI Analyses of Breast Tissue: use AI analyses of breast tissue samples to help us find out what types of benign breast disease are linked to a higher risk of developing breast cancer. This will help women with benign breast diseases to understand their risk and take preventive measures.
• Securely Share Generations Study Data: make the Generations Study data securely available to the wider research community to enhance cancer research. This will accelerate discoveries and improve outcomes for women.

Researchers

Epidemiology Research Assistants

PhD Students

Data engineers and managers

Participant engagement and involvement

Participant engagement and involvement are crucial elements in the success of the study. A Participant Panel with study representatives provides feedback and contributes to the development of new research initiatives.

Beyond this formal structure, participants remain actively involved through various channels. Regular newsletters keep them informed about study progress and findings, while also providing a platform for them to share their experiences. Email and phone communications provide direct lines for participants to ask questions and provide valuable feedback. This two-way communication ensures that participants are kept up-to-date and also feel a personal connection to the study, enhancing their commitment and the overall quality of the research.

Population, Data and Biospecimens

Participants in the Generations Study provide data through questionnaires and most provided a baseline blood sample to study genetics and other biomarkers. A subset of participants have worn physical activity monitors (for 8 days at a time) and some have provided urine samples. Medical data, specimens and imaging is obtained through requests and data linkages to NHS medical records.

At recruitment, half of the cohort were between the ages of 45-64 (49%), with 42% of the cohort younger and 9% older. 43% of the cohort lived in Southern England with 89% of the cohort being from England as a whole. The rest of the cohort lived in Wales (4%), Scotland (7%), and Northern Ireland (1%). Compared to the national population, the cohort has an overrepresentation of women with higher socio-economic status, White ethnicity, and those residing in Southern England. To ensure the applicability of research findings to more diverse populations across the UK, comparisons with national data and other cohorts are conducted.