For Participants

The Breast Cancer Now Generations Study participants are a dedicated group of 110,000 women from across the UK who have been contributing to the study for over 20 years.

Newsletters

Newsletters are sent biannually to ensure participants are kept up to date on research progress and findings. They also serve as place of community building where participants can share their experiences with being a part of the study.

Below are our past newsletters in case you missed them:

Additional past newsletters are not publicly available, but are available to all study participants upon request.

Participant Panel

Centring participant voices in Generations Study is important to the integrity and success of the study.

The Participation Panel consists of a representative group of study participants who meet biannually to give feedback to the Generations Study research team and contribute to planning future research initiatives. The goal of the panel is to integrate participant voices in the development of new research initiatives and provide a general forum for feedback.

Outside of Participant Panel, we regularly communicate with our entire participant populations through newsletters and have direct email channels set up to answer any personal questions or to provide feedback.

If you would like to know more about the Participant Panel and how to get involved, please contact us for more information.

Update Contact Information

It is important that the Generations Study has updated contact information for all of our participants to ensure that study updates and any future data collection inquiries can reach you.

If you would like to update your contact details for any reason, please use this form or email us.

Withdrawal

 We greatly value your continued participation over the years, which has contributed to important research discoveries at the Generations Study. However, you can reduce your involvement or withdraw from the study at any time, without giving any reason. 

Below you will find your opt out options and step-by step guidance on how to notify us of your decision.

You may reduce your involvement by withdrawing consent for any of the following study components: receiving questionnaires and other study communications; allowing access to your medical records or centralised NHS data; and/or allowing access to your pathology samples.

Partial Withdrawal: You will no longer receive contact from the programme, but your samples and existing data can still be used in future research.
Full Withdrawal: All contact will cease, and your samples and data will be destroyed or put beyond use.

Please complete and submit the appropriate webform to let us know your decision.

After submitting the form save a copy of it for your reference.

If you still have questions, please refer to our FAQs or email us at generationscohort@icr.ac.uk.

How to notify us of your decision:

Reduce Your Involvement

You may reduce your involvement by withdrawing consent for any of the following study components: receiving questionnaires and other study communications; allowing access to your medical records or centralised NHS data; and/or allowing access to your pathology samples.

However, you will still be part of the Generations Study and we will still analyse any data and biological samples you provided before you asked for reduced involvement as well as any new data you have continued to consent to being collected moving forward.​

Please note that if you choose to reduce your involvement in more than two components, you will automatically be classified as partially withdrawn from the study.

Our opt out forms are under development temporarily. Please contact us of your decision at generationscohort@icr.ac.uk.

Withdraw from the study

If you wish to leave the Generations Study completely, you can choose either partial withdrawal or full withdrawal.

  • Partial withdrawal: We will no longer contact you with questionnaires or any study communications. We will stop accessing and collecting new data from your health records. You will no longer be part of the Generations Study; however, we will continue to analyse any data and biological samples that you provided before you withdrew. ​

  • Full withdrawal: We will no longer contact you with questionnaires or any study communications. We will stop accessing and collecting data from your health records. Also, your data will not be used in any future data analysis and your biological samples will be destroyed or, if for technical reasons, will be put beyond use. However, it will not be possible to remove your data from any research that has already started, or from any datasets released for research that were prepared before you withdrew. You will no longer be part of the Generations Study and we will only keep a simple record about your preferences so that we know not to contact you in future.​

Main differences between the two withdrawl options:

Please note that if you do not want us to use your biological samples for further analysis, you will have to choose full withdrawal.

Our opt out forms are under development temporarily. Please contact us of your decision at generationscohort@icr.ac.uk.

FAQs

  • If you are taking part in the Generations Study and want to contact the study team with feedback or inquiries on the study, please send us an email at generationscohort@icr.ac.uk

    We look forward to hearing from you.

  • It is important that the Generations Study has updated contact information for all of our participants to ensure that study updates and any future data collection inquiries can reach you.

    If you would like to update your contact details for any reason, please use this form or email us at generationscohort@icr.ac.uk.

  • All data that are collected are confidential and no information is collected without your consent. Please see more about how the Generations Study keeps your data secure below.

    Questionnaires

    All participants completed the recruitment questionnaire when they joined the study on health factors and personal experience with cancer. Since then, there have been four follow up questionnaires to look at how these risk factors have changed over time. The fifth questionnaire is currently underway.

    Blood Samples

    Most participants provided blood samples when they joined the study. These samples are securely stored for use in approved research projects. For example, researchers have used them to study possible genetic and hormonal factors that influence breast cancer risk.

    Cancer incidence and mortality

    We assess cancer diagnoses and death through national cancer registration and death registers (The National Health Service Central Registers), in addition to participant self-reports and deaths reports from family members.

    Pathology Specimens

    We collect breast cancer tumour samples and are processing the blocks to analyse DNA/RNA.

    Mammograms

    We are in the process of collecting mammograms from breast cancer screenings with participant consent.

    Genotyping

    Blood samples from participants with breast and ovarian cancers are sent to external laboratories for genotyping to calculate polygenic risk scores (PRS).

    Hormones and other assays

    We have measurements for a subset of participants on hormone levels from the blood samples.

    Accelerometery

    We have collected participant physical activity data (24 hour continuous 8-day triaxial 100Hz accelerometery) for a smaller subset of the Generations study.

    Urine Samples

    We have collected urine samples for a subset of pre and post-menopausal participants.

  • All data that are collected are confidential and no information is collected without your consent.

    All information collected about you during the course of the research will be treated in the strictest confidence, in accordance with the Data Protection Act, and kept under the supervision of Professor Garcia-Closas, who is a medical doctor. We will not pass on personal information to anyone outside the study, and no individually identifiable information will be published. All individually identifiable data will be destroyed at the end of the study.

    Personal participant information is only available to the study team at The Institute of Cancer Research. In particular, it will not be supplied to, or be available to, other ICR employees or Breast Cancer Now, and will not be used to solicit donations by or on behalf of Breast Cancer Now or the ICR. The ICR takes appropriate measures to ensure that the information is kept secure.

    More information on our privacy policy can be found here.

  • We value your continued participation over the years, which has contributed to important research discoveries at the Generations Study. However, you can reduce your involvement at any time, without giving any reason. 

    Please refer to our opt out information to understand more about your options and how we will manage your data moving forward.

  • We value your continued participation over the years, which has contributed to important research discoveries at the Generations Study. However, you can reduce your involvement or withdraw from the study at any time, without giving any reason. 

    Please refer to our opt out information to understand more about your options and how we will manage your data moving forward.