IRD Research Project and Clinical Trial Register

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This study aims to observe the progression in patients with the inherited retinal disease (IRD) retinitis pigmentosa 11 (PRPF31 or RP11) over the period of four years.

You will be offered compensation for your time, and for travel (flight and car), parking, lodging, and meals.

Recruiting locations:

• Centre for Eye Research Australia, East Melbourne, Victoria
• Lion’s Eye Institute, Western Australia

Accessing local playgrounds goes beyond enjoyment – it is fundamental to enhancing quality of life, enabling development, learning, and resilience for all users. However, people with diverse abilities face challenges in accessing playgrounds when they are not designed with social inclusion in mind. By working with relevant stakeholders, we aim to determine a set of best practice guidelines for designing accessible and inclusive playgrounds that allow social inclusion and enhance community integration, belonging, health and wellbeing. 

This study will begin our work by investigating the experience of playgrounds for children with vision impairment and their parents/carers. If you are a parent, carer or professional who supervises children with vision impairment in playgrounds we hope that you will consider participating in our research. Your experiences and feedback will help us focus our work on what matters in playgrounds for children and their families.

This is a controlled, open label, pilot study to assess the safety, efficacy, and usability of an ARIA device with people who ar blind or who have no light perception or light perception only. 

ARIA Research is creating assistive technology with, and for, people who are blind. If you would like to test the ARIA device and tell us how to improve it, there is a clinical trial taking place in Sydney between June and August this year. To join this research, you need to be over 18,  a person who is totally blind or has light perception only, and able to walk independently with a long cane.

To find out more information and check if the study is appropriate for you, click on the button below for More Information.

Recruiting location: Haymarket, Sydney NSW

This project aims to identify the top 10 research priorities in Inherited Retinal Diseases from the perspective of:

• individuals living with an Inherited Retinal Disease
• guardians and family members and
• health professionals

Two surveys have now been undertaken to obtain a list of questions that individuals living with an inherited retinal disease would like answered by research.

Expressions of interest to participate in two online workshops to finalise the Top 10 list of research priorities are now open. These workshops will be held online on 8th and 9th August. Expressions of interests will be accepted until the 17th July. 

If you are selected to participate in the workshops and are attending as someone with lived experience, you will be reimbursed for your time at $40 per hour via gift card.

This study aims to explore how caring for a person diagnosed with an inherited retinal disease as a child impacts the carers’ life and if the impact changes as the person being cared for gets older.

You will be offered compensation for your time ($60 for one hour, research visits may take up to 2 hours) and also compensation for parking if the interview is face to face.

The AIRDR was established in 2009 and has proudly been funded by Retina Australia since its inception.

• It is Australia’s largest DNA bank for IRDs, with over 9000 registrants.
• The AIRDR collects DNA samples, family history and clinical data.
• It is an enduring research registry of genetic information.
• The primary aim of the AIRDR is to characterise the genetic spectrum of IRDs in the Australian population in order to guide research into treatments and cures for IRDs.

Lead Investigator: Terri McLaren (Medical Scientist-in-Charge)

The inherited retinal disease (IRD) service began in 2003 and is led by Ophthalmologist (Professor John Grigg and Clinical Geneticist, Professor Robyn Jamieson).

• The group manages adults and children and their families with IRD’s. Modern IRD management involves detailed ophthalmic structural and functional  assessment.
• Functional tests include visual field testing, visual electrophysiology and mobility assessment. Structural assessments include wide field fundus autofluorescence imaging and optical coherence tomography.
• These assessments form the basis for diagnosis, assessment of visual function and the foundation to assist in interpreting genetic results.

Professor Jamieson is also Head of the Eye Genetics Research Unit at the Children’s Medical Research Institute where her team is investigating novel genetic variants in IRDs and developing novel therapies for IRDs.

Based at the Lions Eye Institute in Perth, the WARD study collects clinical and genetic information on people with inherited retinal diseases (IRDs).

Participants with IRDs are required to have detailed eye assessment once every 6 months for disease monitoring. Blood and skin cells are collected once for disease modelling and development of personalised treatment of retinal degeneration.

The Lead Investigator, Associate Professor Fred Chen, is also the Head of the Ocular Tissue Engineering Laboratory at Lions, developing new treatments for IRDs. 

The VENTURE registry collects retrospective and prospective data from people living with an inherited retinal disease. It collects both clinical and genetic information on people living with IRDs, including female carriers of X-linked IRDs

• Participants can choose to be remotely registered or attend a baseline research visit for eye examinations and vision and lifestyle questionnaires.
• Participants can choose to return for longitudinal visits and other research studies, with no obligation to do so at any time. They can also opt-in to be contacted should any relevant clinical trials become available and for a report to be sent back to the referring clinicians following VENTURE related research visits.
• Recruiting participants in East Melbourne and Carlton.

Lead Investigators: Associate Professor Lauren Ayton and Dr Thomas Edwards 

In this study you will trial two mobility aids, one which uses sound and the other vibrations,  to tell you when objects are close by.

The research team will be comparing these devices with your long cane, to find and avoid cardboard box obstacles.

Participants will be provided with a $50 Woolworths gift card as a thank you for their time, which will take up to 2 hours for participation.