What is this research study about?

There has been much progress in therapies to treat eye conditions such as inherited retinal disease (IRD) and age-related macular degeneration (AMD). One treatment option that is being developed and tested in the laboratory is stem cell therapies.

We want to understand what people with an IRD, AMD or who are a caregiver (e.g., a parent or spouse) of someone with an IRD or AMD think about stem cell therapies as a potential future treatment option.

You don’t need to have any prior knowledge about stem cell therapies to participate.

The findings from this study will help us to prepare for when stem cell therapies become available in Australia, and how to best support people and their doctors who are considering this treatment option.

What am I being asked to do?

Participants will be invited to complete a questionnaire that should take around 30 minutes. The questionnaire can be completed online, on paper or via telephone call.

At the end of the questionnaire, you will be asked whether you would also like to opt-in to an interview. The interview should take around 45-minutes. Depending on the level of interest for the interviews, it is possible that not every person who opts-in to an interview will be contacted.

If you opt-in, we will contact you by telephone and/or email to confirm whether you are interested in taking part in the interview, and if so, to schedule a date/time that suits. You can always decline participation in the interview at that time.  

Who is eligible to participate?

You are eligible to participate in this study if you:

  • have been diagnosed with an IRD (e.g. retinitis pigmentosa, Usher syndrome)
  • have been diagnosed with AMD; and/or
  • are a caregiver of someone with an IRD or AMD (e.g., parent, partner, sibling)

For a more extensive list of IRDs, click here. 

If you assign to more than one of the above cohorts (e.g., you have an IRD and are a caregiver of someone with an IRD), you will be asked to complete the questionnaire according to the single cohort that you wish to share your perspectives on.

You may choose to complete the questionnaire again, responding from a different perspective, should you so wish.

All participants will also need to:

  • be 16 years or older
  • be currently living in Australia; and
  • be able to provide informed consent.

Do I have to take part in this research study?

This study is voluntary – it is up to you whether you take part or not. Your decision to take part will not impact your relationship with any of the study team or your treating team
You can withdraw at any time, without consequence by telling us when we talk to you or by calling (02) 9348 0708 or emailing us at visionlossPSP@unsw.edu.au.

If you withdraw from the study after you have participated, you can also ask the researchers to delete any information you provided where possible.

What are the potential benefits to participating?

We can’t promise that you will receive any benefits from participating in this study. However, you may find it helpful to share your experiences and contribute to research

As a thank you, each participant will go into a draw to win one of two $50 gift vouchers.  We will randomly select the people who win the gift vouchers once we have finished the study – toward the end of 2025. We will contact you via email to tell you of the outcome of the draw. 

What are the potential risks to participating?

It is possible that thinking about your condition may cause you to feel worried or upset. If you do become upset because of your participation in the research, you can take a break, postpone or end your participation at any time.

If you would like, a member of the research team will also be able to discuss support services available in the community. Additionally, Lifeline is a free 24-hour helpline that you can ring 13 11 14. If it is an emergency, call 000.

What will happen to information I give you?

  • Your participation is confidential. Your doctors and care teams will not know if you have participated.  Your participation will only be disclosed with your permission, except as required by law (e.g., by court order).
  • The lead researcher (Eden Robertson) will de-identify your data for the analysis and reporting. This ensures that your responses are anonymous.
  • If you are participating in an interview, we will audio-record your interview for transcription purposes. We will also share the interview transcription with you so you can make any changes or add further comment. You will have 2-weeks to provide any changes. This can be done via email or telephone.
    Information you share with us will be stored so only the study investigators can access it; and for at least 15 years after the research has been finished. This is the minimum period for which research data must be stored.
  • Hard copy data, such as paper questionnaires, will be held securely at UNSW Sydney. Electronic data will be password protected on the UNSW server, with access only available to UNSW researchers involved in the study.
  • We will share the results of our research study in publications in peer-reviewed journals, at conferences and other professional health service forums.

How will I find out what the results of the research study are?

We will send all participants a copy of the results of the study once it is finished. This will likely be in late 2025.

Retina Australia will also publish the results of the study once complete.

Who is conducting this research?

This project is also guided by an expert steering committee involving researchers, health professionals, community organisation representatives (Retina Australia, Macular Disease Foundation Australia) and individuals with lived experience of an IRD or AMD. The team leading this project includes:

  • Dr Eden Robertson (UNSW Sydney; Sydney Children’s Hospitals Randwick)
  • Dr Kate Hetherington (UNSW Sydney; Sydney Children’s Hospitals Randwick),
    Associate Professor Anai Gonzelez-Cordero (Children’s Medical Research Institute; University of Sydney)
  • Professor Megan Munsie (Murdoch Children’s Research Institute).

What if I have any questions about this study?

If you have any questions about this study, you can contact us at visionlossPSP@unsw.edu.au or by calling us on (02) 9348 0708.  

What if I have a complaint or any concerns about this study?

All research in Australia involving humans is reviewed by an independent group of people called a Human Research Ethics Committee (HREC). This study has been approved by the Sydney Children’s Hospitals Network (SCHN) HREC (approval number: 2023/ETH01514).

If you have any concerns or complaints about any aspect of the project or the way it is being conducted, you may contact the SCHN HREC on (02) 9845 1253 or SCHN-Ethics@health.nsw.gov.au.

 

To learn more and participate in the study