Project: A survey of patient-reported experiences with genetic testing for inherited retinal diseases

Researchers: Dr Alexis Ceecee Britten-Jones (Responsible Researcher)
A/Prof Lauren Ayton (Co-Principal Investigator )
Tel: +61 3 8344 3441 Email: IRD@groups.unimelb.edu.au

Co-researchers: Ms Sujani Thrimawithana, Ms Fleur O’Hare, Dr Thomas Edwards, A/Prof Heather Mack, Mr Joshua Schultz, Ms Lisa Kearns, Dr Jonathan Ruddle, Dr Aamira Huq, Prof Alex Hewitt, Prof David Mackey .

Thank you for your interest in participating in this research project. The following will provide you with further information about the project, so that you can decide if you would like to take part in this research.

Please take the time to read this information carefully. You may ask questions about anything you don’t understand or want to know more about. Your participation is voluntary. If you don’t wish to take part, you don’t have to. If you begin participating, you can also stop at any time. Please note that because this online survey is anonymous, if you do stop and then decide you wish to participate, you will need to start again from the start.

We are conducting this survey to learn more about people’s experiences with genetic testing for inherited retinal diseases (IRDS), as well as their perspectives of the value of having genetic results. This study is focused on people who live in Australia.

Should you agree to participate, you will be asked to complete an online survey that includes questions about yourself and your experience with genetic testing for IRDs. If you are a parent or guardian of a person with IRD, the questions will ask about your experiences with your dependent’s testing process and outcomes.

The questions ask about your motivations for undertaking genetic testing, experiences and feelings surrounding receiving genetic testing results, opinions on the value of genetic testing, and knowledge of gene therapy treatments.

This survey is anonymous and should take around 15–30 minutes to complete. You do not have to provide your name or contact details, but you will be given the option to leave an email address if you wish to receive a copy of the study findings or to be contacted about future research.

There are no direct benefits for participating in this survey and no reimbursements for contributing to the study. This survey will assist us in learning more about the experiences and value of genetic testing for people with IRDs. This information can help us better understand how we can support people with IRDs who have genetic testing in the future.

There are no anticipated risks in taking part. However, if you experience any distress from participation, please contact your GP for professional guidance and advice. Our research team are also available to discuss any concerns that you may have– you can contact us via email IRD@groups.unimelb.edu.au or call (03) 8344 3441.

Additional resources are available if you do experience distress, including:
Lifeline 24 hour counselling 131114
Lifeline Victoria Suicide 24 Hour helpline 1300 651 251
Beyond Blue 1300 224 636
Veterans Counselling Service 1800 011 046
Royal Victorian Eye and Ear Hospital consumer liaison officer 03 9929 8666
Retina Australia 1800 999 870
Vision Australia 1300 847 466

No. Participation is completely voluntary. You can withdraw at any time with no risk of negative consequences. If you choose to not participate, this will not affect your relationship with your clinical care provider or patient support group, or access to any future treatment that may become available for you. If you choose to withdraw your participation in this study, we would like to use the information you have provided until your withdrawal. As the responses are anonymous, we are unable to withdraw any data that you have already provided.

A summary of our findings will be sent via email (if provided) and be made available via support groups and social media. We will also publish results in academic journals and present them at national and international scientific conferences.

You will not be identifiable within any results published from this study. Your responses to the survey will be collected and data will be stored in a secured online database hosted by the University of Melbourne for a period of five years after the final publication or public release of the study findings. The researchers may undertake related studies in the future using your anonymised data.

If you would like more information about the project, please contact Dr Ceecee Britten-Jones, IRD@groups.unimelb.edu.au

This project has human research ethics approval from The University of Melbourne [ID: 22502]. If you have any concerns or complaints about the conduct of this research project, which you do not wish to discuss with the research team, you should contact the Research Integrity Administrator, Office of Research Ethics and Integrity, University of Melbourne, VIC 3010. Tel: +61 3 8344 1376 or Email: research-integrity@unimelb.edu.au.
All complaints will be treated confidentially. In any correspondence please provide the name of the research team and/or the name or ethics ID number of the research project.

You may participate by completing this online survey. If you would prefer to dictate your answers to a study team member over the phone, please email IRD@groups.unimelb.edu.au or call 03 8344 3441.

By proceeding, you agree that you have read the above information and voluntarily agree to participate.