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Remaking Fertility

Information for Participants

Study title

Survey on Fertility Treatment

Version number and date

Version 1.0: 05.01.2024

Researcher’s name

Principal Investigator: Dr Manuela Perrotta

Queen Mary Ethics of Research Committee reference number:

DSREC57

Invitation paragraph

You are being invited to participate in a survey. Before you decide whether or not you wish to participate in this survey, it is important for you to understand why the research is being done and what it will involve. Please take time to read the following information carefully and get in touch with the principal investigator if you would like more information.

What is the purpose of the study and what would taking part involve?

The research consists of a survey on fertility treatment. The survey is designed for individuals aged 18 or older residing in the UK who have either received fertility treatments such as IVF or are contemplating these treatments alongside related additional procedures. This survey typically takes approximately 15 minutes to complete and does not gather any personal or identifiable information.

Our aim is to understand how people search for information about fertility treatments and their thoughts on empowering patients to make informed choices. No personal or identifiable data will be collected throughout the survey. Your answers will help to identify the current gaps and challenges in the information available on fertility treatments and develop strategies for improvement, ultimately enhancing the overall experience of fertility patients.

Why am I being invited?

We're inviting you to take part in this research as you've experienced or are contemplating fertility treatments such as IVF. This study is intended for individuals who are (or are planning to become) fertility patients, residing in the UK, and above the age of 18. If you do not fit these criteria, we kindly ask you not to participate.

Do I have to take part?

This information for participants page has been written to help you decide if you would like to take part. It is up to you whether you wish to take part. Your participation is entirely voluntary. You're free to skip questions and withdraw at any point during the survey.

What are the possible benefits of taking part?

By participating in this research, you contribute to enhancing the understanding of how individuals seek information regarding fertility treatments. Your insights will play a vital role in enhancing the quality of information and empowering patients to make informed choices about their fertility journey.

What are the possible disadvantages and risks of taking part?

Your participation in this study involves minimal to no risks or disadvantages. However, as with any survey or research participation, there might be a possibility of feeling uncomfortable while answering some questions. If you feel uncomfortable or wish to withdraw at any point, you have the right to do so without any repercussions.

Expenses and payments

This study is solely for research purposes, and no financial compensation will be provided to participants. Your voluntary participation is immensely valuable to us, and your insights will significantly contribute to the advancement of our research goals.

What information about me will you be collecting?

We will not be collecting any personal or identifiable information from you. This survey is designed to ensure the confidentiality and anonymity of all participants.

How will my data be stored and who will have access to it?

All data will be stored anonymously in a secure Sharepoint database, following Queen Mary University of London's data protection policy and data storage guidelines. Access to data will be limited to the research team only.

When and how will my data be destroyed?

Your data will be securely retained for a period of 5 years in line with Queen Mary University of London's (QMUL) data storage guidelines. After this period, all data will be securely disposed of in accordance with QMUL's approved information disposal procedures.

How will my data be used and shared?

The anonymised data collected may be used in various research outputs, including insights, briefs, reports, presentations, and publications to disseminate study findings. All data management will strictly adhere to Queen Mary University of London's Research Data Access and Management Policy.

Access to the data repository for peer review processes may be provided upon reasonable request, ensuring compliance with established guidelines and maintaining the confidentiality and anonymity of all participants’ information.

Under what legal basis are you collecting this information?

Queen Mary University of London processes personal data for research purposes in accordance with the lawful basis of ‘public task’.

Please read Queen Mary’s privacy notice for research participants containing important information about your personal data and your rights in this respect. If you have any questions relating to data protection, please contact Queen Mary’s Data Protection Officer, Queens’ Building, Mile End Road, London, E1 4NS or data-protection@qmul.ac.uk or 020 7882 7596.

What will happen if I want to withdraw from this study?

You can withdraw at any stage of the survey and submitted data will not be retained. Please note that withdrawal after completing the survey is not feasible due to its design.

What should I do if I have any concerns about this study?

If you have any concerns about the manner in which the study was conducted, in the first instance, please contact the researcher(s) responsible for the study Dr Manuela Perrotta at m.perrotta@qmul.ac.uk.

If you have a complaint which you feel you cannot discuss with the researchers then you should contact the Research Ethics Facilitators by e-mail: research-ethics@qmul.ac.uk. When contacting the Research Ethics Facilitators, please provide details of the study title, description of the study and QMERC reference number (where possible), the researcher(s) involved, and details of the complaint you wish to make.

Who can I contact if I have any questions about this study?

Principal Investigator: Dr Manuela Perrotta

Email: m.perrotta@qmul.ac.uk

Telephone: +44 (0)20 7882 6542

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