Australian Inherited Retinal Disease Registry and DNA Bank
Inherited retinal diseases (IRDs) are a group of genetic eye conditions that can cause vision loss and blindness at any age, and are the leading cause of blindness among working-age Australians. With more than 300 genes linked to IRDs, genetic research plays a critical role in improving patient care and developing future treatments.
AIRDR is a national and enduring genetic IRD research program based at Sir Charles Gairdner Hospital in Western Australia, established in 2001. It is Australia’s largest genetic IRD research resource, bringing together genetic, family, and other information from more than 11,000 participants. We have approximately 10,000 DNA samples in our care, representing more than 4,600 Australian families affected by IRD. To date, AIRDR DNA samples have been used for more than 7,200 genetic analyses.
This invaluable program provides an important foundation for national and international research into IRDs, helping us helping us better understand the genetic causes of IRDs, support the development of treatments and personalised medicine, and identify suitable participants for clinical trials and emerging treatments.
Supporting research into future treatments
AIRDR collaborates with hospitals, universities, research institutes, and industry partners across Australia and internationally to advance research into IRDs, including retinitis pigmentosa, Stargardt disease, Usher syndrome, cone and rod dystrophies, macular dystrophies, and others. These collaborations support development and access to clinical trials and emerging treatments for Australians affected by IRDs.
Why participate?
You can help researchers:
- advance genetic discovery
- build a more complete picture of the genetic causes of IRD in Australia
- support the development of personalised and other innovative treatments
- connect potentially eligible AIRDR participants with clinical trials and treatment programs.
Your participation may result in the provision of a genetic research report to your ophthalmologist or genetic counsellor to support diagnosis, ongoing care or family planning. To date, we have provided more than 2,500 genetic research reports for AIRDR participants, free of charge.
What does participation involve?
Participation may include:
- Providing a blood or saliva sample for DNA analysis.
- Sharing information about your eye condition and family history.
- Being contacted about future research studies or clinical trials that may be relevant to you.
Participation is voluntary, and all information is handled confidentially. Information that could identify you or your family will not be shared.
Interested in participating?
If you have an IRD, or know someone who may be interested in participating, please email scghmtp@health.wa.gov.au
You can also download an Expression of Interest form and participant information brochure.
AIRDR was established through the generous support of Retina Australia (WA) and Retina Australia, and has received ongoing support from Sir Charles Gairdner Hospital and the Department of Medical Technology and Physics since its inception.
Sir Charles Gairdner Hospital Human Research Ethics Approval: RGS04985