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Vision Loss Priority Setting Partnership



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?

We have already completed our first survey to capture any unanswered questions that individuals have related to Inherited Retinal Diseases. Using the responses in our first survey, we are now asking individuals to rank around 40 questions based on the ones they consider are most important.


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

This survey closed 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); and/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; and/or
  • a health professional involved in caring for individuals who have an Inherited Retinal Disease, with a focus on vision loss.

Participate via this link: https://unsw.au1.qualtrics.com/jfe/form/SV_bvWXQSJSMoHUBZc


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); and/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; and/or
  • a health professional involved in caring for individuals who have an Inherited Retinal Disease, with a focus on vision loss.

If you would like to be notified when the Expressions of Interest form for the workshops open, please contact us at [email protected].


IRD Patient and Family Engagement Day

On the 23rd of March, 2024, CMRI and UNSW Sydney co-hosted the first Inherited Retinal Disease Patient and Family Engagement Day in Sydney, Australia. For an overview of the event, please see the CMRI event post or UNSW event post.

Recordings of the Welcome address from The Hon Mark Butler (Minister for Health and Aged Care), guest presentations and the panel discussion can be found following the button link below.

Watch the recordings

For any other enquiries about the event, please contact us at [email protected].

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