This Register aims to provide information about some of the research projects, programs and clinical trials in the area of inherited retinal disease that are currently being conducted. 

Included are projects relating to people living with an inherited retinal disease, but some may also involve carriers, parents and guardians, carers, family members and health care professionals. 

Below is a listing of some of the projects that are currently in progress. 

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.
  • We advise that you seek advice from your health care professional.

Register of Research Projects and Clinical Trials into Inherited Retinal Disease 

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Research Project - Recruiting

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

Disease: All inherited Retinal Diseases

Participants: Patients, Carriers

The VENTURE registry collects retrospective and prospective data from people living with an inherited retinal disease.

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.

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

Research Project - Recruiting

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.

Sponsor: University of Technology, Sydney
Location: Australia Wide

Research Project - Recruiting

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

Research Project - Active (not recruiting)

Vision Loss Priority Setting Partnership

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

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

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

Sponsor: University of NSW, Sydney
Location: Australia Wide