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
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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
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
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
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