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Vision Loss PSP



Working with patients, carers and health professionals to influence the future of research into inherited retinal diseases.

The Stem Cell Medicine Group at Children's Medical Research Institute is collaborating with researchers at the Behavioural Sciences Unit and University of New South Wales to undertake a Priority Setting Partnership (PSP).

More information about PSPs and the James Lind Alliance is available here.

Why are we doing a PSP?

A PSP is a specific method developed by the James Lind Alliance to develop a ‘Top 10’ list of unanswered research questions/topics.

This project will allow us to identify the priorities for researchers who are working to better diagnose and treat inherited retinal diseases. Our aim is to disseminate the priorities and ultimately increase research that aligns with what matters most to patients, carers and health professionals.

What does this PSP involve?

The project began in May 2023 and is expected to take two years to complete. PSP’s are very structured projects, with five key stages that patients, carers and health professionals can get involved in:

We are pleased to launch our Steering Group members, representing patients, carers, clinicians, and researchers. You can learn more about our members in the video below:

How can I be a part of this PSP?

You can contribute to this PSP by:


Participating in our first survey

In this short, anonymous survey, you will be asked to share any questions or topics that you think researchers should focus on regarding Inherited Retinal Diseases.

You are eligible to participate if you live in Australia and are:

  • 16 years and older AND have been diagnosed with an Inherited Retinal Disease (including Syndromic Inherited Retinal Diseases, such as Usher Syndrome or Abetalipoproteinemia) or;
  • a guardian or family member (including parents, partners, or siblings) of someone who was/has been diagnosed with any type of Inherited Retinal Disease
  • a health professional involved in caring for individuals who have an Inherited Retinal Disease, with a focus on vision loss

Click here to participate in our anonymous survey – it will take about 5-minutes to complete. Your responses will help us identify the top research priorities for Inherited Retinal Diseases. The survey will close on the 19th of November.


Participating in our second survey

Using the responses from Survey 1, you will be asked to rank a list of about 30 questions or topics that you think researchers should prioritise.

You are eligible to participate if you live in Australia and are:

  • 16 years and older AND have been diagnosed with an Inherited Retinal Disease (including Syndromic Inherited Retinal Diseases, such as Usher Syndrome or Abetalipoproteinemia) or;
  • a guardian or family member (including parents, partners, or siblings) of someone who was/has been diagnosed with any type of Inherited Retinal Disease
  • a health professional involved in caring for individuals who have an Inherited Retinal Disease, with a focus on vision loss


Participating in the final workshop

Toward the end of this project (around July 2024), we will be doing a two half-day, online workshops to finalise the top 10 research priorities. You are eligible to participate if you are:

  • 18 years and older AND have been diagnosed with an Inherited Retinal Disease (including Syndromic Inherited Retinal Diseases, such as Usher Syndrome or Abetalipoproteinemia) or;
  • a guardian or family member (including parents, partners, or siblings) of someone who was/has been diagnosed with any type of Inherited Retinal Disease
  • a health professional involved in caring for individuals who have an Inherited Retinal Disease, with a focus on vision loss


Contact us at [email protected] if you are interested in participating in this project and/or would like to find out more.

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