IRD Research Project and Clinical Trial Register

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This study is a first step to test a new treatment for individuals with a confirmed mutation in the OPA1 gene, which causes a condition called autosomal dominant optic atrophy (ADOA) that affects vision.

This drug is a first of its kind, that targets the root cause of the genetic mutation. It involves giving a single, increasing dose of the treatment directly into the eye to see how safe it is and how well people can tolerate it. 

Overall, the goal is to find the safest and most effective dose of PYC-001 for treating this ADOA.

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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

This study aims to investigate both known and new genetic changes that may be associated with inherited retinal diseases (IRDs). The researchers will search for genetic changes that could be linked to IRDs, but may have not been identified before. 

Participants potentially eligible for this study are those have had a clinically-confirmed inherited retinal disease and whose previous genetic testing report showed inconclusive results, meaning the specific genetic cause was not identified. 

Participation involves a research visit at the University of Melbourne or Centre for Eye Research Australia. The visit involves a research eye test (including vision tests and images of the back of the eyes) and collection of a blood sample for genomic sequencing (to analyse genetic information).  

By learning more about the genetics of IRDs, this study aims to improve our knowledge of these conditions and potentially uncover new genetic causes. This could help people receive an accurate diagnosis and access appropriate treatment options in the future. 

Participants are recruited alongside the VENTURE study.

This project is recruiting adults aged 18 years and over who have difficulties with both their vision and hearing loss, or a communication partner to the participating individual with DSI. 

The purpose of the study is to understand: 

• the impacts of dual sensory impairment (DSI) on social participation from your perspective as a person with DSI or a communication partner and
• your perspective towards participating in a health and wellbeing program.

You can choose to complete the interview remotely via phone call or video call using Zoom or Teams or in-person at Macquarie University. There are no costs associated with participating in this research study.

On completion of the interview, each participant will be reimbursed a $40 gift voucher for a remote interview or home visit. Participants completing the interview at Macquarie University will be reimbursed a $100 gift voucher to account for travel time and costs. 

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 are 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 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.

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

This project has now been completed after two surveys and the two online workshops have now been completed. 

Click on the button to read about the project results.