News & Stories
Spring 2025 Participant Newsletter
Collecting information on who has been diagnosed with cancer
Since the study started in 2004, approximately 4,000 of the 113,000 study participants have reported to us that they have been diagnosed with breast cancer, and 5,000 have been diagnosed with other types of cancer. Until now, we have relied on your responses through questionnaires or notifications to learn about these cancer diagnoses. This year, we are introducing a new method to identify cancer diagnoses using the NHS cancer registration system.
The diagram below demonstrates how data on cancer diagnoses are collected by the NHS to support research like The Breast Cancer Now Generations Study, to plan NHS services and help improve outcomes for patients. The main advantage of using this system for our study is that we can get more detailed and accurate information about the type of cancer by gathering information directly from the NHS for all participants who gave consent to access their medical records when they joined the study. Additionally, this allows us to learn about other health conditions, and then use this study data to explore the causes of other common diseases affecting women in the UK.
“We plan to make changes to the way that we collect information about the health of participants in the Breast Cancer Now Generations Study. We want to make you aware that from now on we will be accessing centralised NHS records to collect information about your health. By ‘centralised NHS records’ we mean records held by NHS England, NHS Scotland, NHS Wales, and Health and Social Care in Northern Ireland. We would share with them identifying details such as name, date of birth, and NHS number, in order to link to their records. This is in addition to asking you to fill-in information about your health in the regular questionnaires. Previously, we only used the central NHS records for participants we had lost contact with. The reason we plan to make this change is for the scientific benefits this would bring to the study in terms of data completeness and accuracy. Without the data from all the participants, the results could be incomplete, inaccurate and biased. We are not proposing to introduce new procedures or methodology or change the design of the study. If you do not want this to take place for you (accessing information from your NHS medical records) please email generationscohort@icr.ac.uk.”
NHS England has given us permission to use the cancer registration system and other types of NHS records for our study to collect information about cancer and other serious medical conditions such as cardiovascular disease. We plan to apply to the NHS in Scotland, Wales, and Northern Ireland for approval to extend this method to all participants. NHS England has asked that we explain this process to you using this statement below from the official approval.