INFORMATION PAGE FOR PARTICIPANTS CONSIDERING TAKING PART IN THE ‘PREDICTING REPRODUCTIVE LIFESPAN’ STUDY
Version 6, 19/11/19
Thank you for showing an interest in this project. Please read this information carefully before deciding whether or not to participate.
What is the aim of the project?
A team of scientists from the University of Exeter Medical School, led by Dr Anna Murray, in conjunction with an industrial collaborator are determining the interest in a test that would combine genetic and lifestyle information to predict early menopause, many years before it occurs. Early menopause (before the age of 45) occurs in 1 in 10 women and is difficult to predict. It is often only identified when women seek assistance for fertility problems, which limits treatment options.
What are participants being asked to do?
As part of the project development we would like to gather the views of members of the public via this questionnaire, to identify what is important, and how best to develop a test that would be useful and acceptable.
Who can take part?
We would like the views of women of all ages and backgrounds. It doesn’t matter if you have been through the menopause or not.
What are the possible disadvantages of taking part?
We will be asking about your experiences of pregnancy, infertility and menopause, which may be a sensitive topic for some women. We will direct you to sources of further support should you need it.
Can participants change their mind and withdraw from the research?
You may abandon the questionnaire at any point and the information you have provided will not be stored. You will be asked to confirm that you want to submit your answers at the end of the survey at which point you will not be able to withdraw.
How will my information be kept confidential?
We do not ask for your name or address, your answers will be totally anonymous and the answers you give cannot be linked back to you as an individual. The information you give will be used to decide the feasibility of a predictive test for early menopause.
The University of Exeter processes personal data for the purposes of carrying out research in the public interest. The University will endeavour to be transparent about its processing of your personal data and this information sheet should provide a clear explanation of this. If you do have any queries about the University’s processing of your personal data that cannot be resolved by the research team, further information may be obtained from the University’s Data Protection Officer by emailing dataprotection@exeter.ac.uk or at www.exeter.ac.uk/dataprotection
What data or information will be collected and what use will be made of it?
We will store your answers to the questions in the survey on the University of Exeter secure network, which will only be accessible to members of the research team. All information will be completely anonymous, with no link back to any information that could identify you. We will share a summary of answers from all participants with our industry collaborators, and post the findings on our website (http://www.t2diabetesgenes.org/). We will also share the findings with funding bodies and possibly publish the results in a scientific journal. Data will be stored for a period of 10 years from the end of the study and then destroyed.
Thank you for your interest in the study. If you have any questions please contact Dr Murray at , tel: 07803588770.
Complaints
If you have any complaints about the way in which this study has been carried out please contact the Chair of the University of Exeter Medical School Research Ethics Committee:-
Ruth Garside, PhD
Chair of the UEMS Research Ethics Committee
Email:
This project has been reviewed and approved by the
University of Exeter Medical School Research Ethics Committee
UEMS REC REFERENCE NUMBER: RG/CB/19/06/216