Take part in research

Global survey of potential participant perspectives on ocular gene therapy

The Centre for Eye Research Australia and the University of Melbourne invites people living with inherited retinal disease to share their views and opinions about new potential gene therapy treatments.

Thanks for your interest in our research, however this survey has now closed and is no longer accepting new submissions.

Results will be shared in the coming months.

If you would like to keep up to date with news and research from CERA, please subscribe to Eye-News.

Information for participants

Plain language statement

Research project title:  Global survey of potential participant perspectives on ocular gene therapy

Institution: Departments of Optometry and Vision Sciences, and Surgery (Ophthalmology), Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne

Project Supervisor: A/Prof Lauren Ayton (Tel. +61 3 8344 3441, Email: layton@unimelb.edu.au)

Researchers: A/Prof Heather Mack (hmack@eyesurgery.com.au), Dr Alexis Ceecee Britten-Jones (ac.brittenjones@unimelb.edu.au), Dr Myra McGuinness (myra.mcguinness@unimelb.edu.au)

What is this research about?

We are conducting research into the perspectives of people with inherited retinal disease, regarding gene therapy for their condition.

There has been a lot of progress in the field, and we are interested to understand your knowledge and views of these treatments.

What will I be asked to do?

As part of this study, you are invited to complete an online survey.

The questions ask about how your condition has impacted your lifestyle, what you know about clinical trials in general, and what you know about ocular gene therapies.

The survey will take a maximum of 1 hour to complete.

Participants will be people with inherited retinal disease who are English speaking, and/or their parents/guardians.

We will include people from a range of backgrounds and experiences, and therefore you will be asked to provide details of your condition and any previous experience with treatments. Your personal details will remain confidential at all times.

At the end of the survey, you will be asked if you want to be contacted for further research studies (like this survey) and if you want to receive a lay person summary of the report findings.

Your participation is entirely voluntary, and there is no obligation for you to provide your contact details.

What are the possible benefits?

The survey results will assist us understanding how people with inherited retinal disease view gene therapy of their condition, and may inform future clinical trials of treatment for inherited retinal disease.

What are the possible risks?

There are no anticipated risks in taking part.

The questions asked will not contain sensitive information.

However, if you experience any distress from participation, please contact your health professional or a support group such as LifeLine (www.lifeline-intl.com) for guidance and advice.

Our research team are also available to discuss any concerns that you may have, or feelings of distress from the questions – you can contact us via email (layton@unimelb.edu.au) if needed.

Do I have to take part?

No. Participation is completely voluntary. You are able to withdraw at any time.

As this survey is anonymous, if you do decide to withdraw after you have entered data, we will only be able to delete it if you have included your contact details, otherwise, we will not be able to determine which data belongs to you.

What will happen to information about me?

Your contribution to the survey will be collected and data will be stored in a secured location for a period of five years.

All data will be anonymized, and you will not be identifiable within any publications made as a result of this study.

The researchers may undertake related studies in the future using your de-identified data, but this would require further ethical approval.

Will participating cost me anything?

No, participating in the study is completely free of charge.

Will I be reimbursed for my time?

No, you are participating voluntarily to improve researchers’ understanding of your knowledge regarding treatments for your condition.

You will not receive any payments, incentives or reimbursements for your participation.

Will I hear about the results of this project?

If you indicate at the end of the survey, and leave your email address, you will receive a de-identified copy of the aggregated results at the completion of the study (anticipated 2024).

These reports of deidentified aggregated results will also be provided to patient support groups which have assisted in participant recruitment.

Study results will be disseminated to the scientific community through scientific publications in peer-reviewed journals and presentations in relevant national and international conferences.

Who is funding this project?

This project is being funded by the investigators, with no financial involvement from pharmaceutical companies.

Where can I get further information?

If you would like more information about the project, please contact A/Prof Lauren Ayton at layton@unimelb.edu.au

Who can I contact if I have any concerns about the project?

This research project has been approved by the Human Research Ethics Committee of The University of Melbourne (project ID 25634).

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.

What happens now?

This survey has now closed, and we are no longer accepting new submissions.

Thank you for your interest.