The (inherited retinal disease) IRD Research Project and Clinical Trial Register aims to provide information about research projects and clinical trials in the area of inherited retinal disease.

The difference between a research project and clinical trial is that a clinical trial involves at least one human health intervention. Common examples of research projects are natural history studies (designed to learn about how vision and eye health changes over time in a particular type of IRD), or surveys and questionnaire studies.

Projects and trials may relate to people living with an inherited retinal disease, but some may also involve carriers, parents and guardians, carers, family members and health care professionals. 

This listing is for informational purposes only
  • Retina Australia does not review, or approve the safety and science, nor endorse any particular research project, program, clinical trial or organisation.
  • You can find out more about each project by clicking on the links provided in the table.
  • You can read about clinical trials and what is involved in participation here, however we strongly advise that you seek advice from your health care professional before participation.

Research Project and Clinical Trial Register into Inherited Retinal Disease 

Filter Results

Search the register

Research Project - ,

Vision Loss Priority Setting Partnership

Disease: All Inherited Retinal Diseases (IRD) including syndromic IRDs

Participants: Carriers, Health Professionals, Patients, Family Members, Parents and Guardians

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 30th of June. 

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.

Sponsor: University of NSW, Sydney
Location: Australia Wide

Clinical Trial - ,

An Observational Clinical Trial of PRPF31 (RP11)

Disease: Retinitis Pigmentosa

Participants: Carriers, Patients

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

Sponsored post

Sponsor: PYC Therapeutics
Location: Western Australia, Victoria

Research Project - ,

Assessing the caregiver experience for patients with inherited retinal disease diagnosed in childhood

Disease: All Inherited Retinal Diseases

Participants: Parents and Guardians

The 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.

Sponsor: University of Technology, Sydney
Location: Australia Wide

Research Project - ,

The Australian Inherited Retinal Disease Register (AIRDR) and DNA Bank

Disease: All Inherited Retinal Diseases

Participants: Family Members, Carriers, Patients

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)

Sponsor: Sir Charles Gairdner Hospital, Perth, Western Australia
Location: Australia Wide

Research Project - ,

Save Sight Institute IRD Registry

Disease: All Inherited Retinal Diseases

Participants: Carriers, Family Members, Patients

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.

Sponsor: The University of Sydney
Location: New South Wales

Research Project - ,

Western Australia Retinal Disease (WARD) study

Disease: All Inherited Retinal Diseases

Participants: Carriers, Family Members, Patients

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. 

Sponsor: Lions Eye Institute
Location: Western Australia

Research Project - ,

The Victorian Evolution of Inherited Retinal Diseases Natural History Registry (VENTURE) Study

Disease: All Inherited Retinal Diseases

Participants: Carriers, Patients

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 

Sponsor: Centre for Eye Research Australia and the University of Melbourne
Location: Victoria

Research Project - ,

The impact of low vision assistive technology on mobility in people with vision impairment

Disease: All Inherited Retinal Diseases (Long cane uses with vision impairment)

Participants: Patients

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.

Sponsor: University of Melbourne
Location: Victoria