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:
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.
For any other enquiries about the event, please contact us at [email protected].
Conclusion Of The Study
On World Retina Day (24th September 2024), CMRI and UNSW Sydney co-launched the Australian research priorities for IRD at NSW Parliament House. CMRI's A/Prof Anai Gonzalez-Cordero was the principal investigator on the project which was led by Dr Eden Robertson (CMRI; UNSW Medicine & Health). Prof Robyn Jamieson and Dr Alan Ma from CMRI were also involved in the steering committee. This project highlighted that the IRD community prioritise research for treatments, alongside research that will support them to live well with their condition.