Australian Inherited Retinal Disease Registry and DNA Bank
Inherited retinal disease (IRD) is the most common cause of blindness in working-age Australians. There are more than 250 genes known to cause IRD.
The Australian Inherited Retinal Disease Registry and DNA Bank (AIRDR) (Sir Charles Gairdner Hospital Human Research Ethics Approval 2001-053) is a research resource which collects DNA from consenting participants from all over Australia and genetically analyses this DNA in order to establish the cause of a participant’s IRD.
The AIRDR is characterising the genetic spectrum of IRDs in Australia in order to guide research into treatments and cures. Genetic results are returned to participants, via their clinicians, where possible, thereby improving disease management for those participants.
At present, we have 8000 DNA samples in our care. Genetic research reports have been sent to more than 1600 of our participants, via their nominated ophthalmologists and/or genetic counselling services, free of charge. We continue to collect DNA at the rate of 300 to 400 samples each year.
This resource is available to approved researchers interested in further elucidating the varied genetic causes of IRD. DNA and relevant supporting information may be made available to approved researchers upon request. Under no circumstances will information that can identify individuals or families be released.
If you know anyone with an inherited retinal disease who may be interested in donating blood or saliva, discussing their family history, or being sent a pamphlet on this resource, please email scghmtp@health.wa.gov.au with your request. Alternatively, a brochure, including an Expression of Interest, may be downloaded using the link on this page. To request printed brochures please select the appropriate link on this page.
We intend to genetically analyse the DNA from all of our families, and the more funding we have the quicker we can do that. To make a donation or to include a bequest in your will, please use the appropriate link on this page.
To download a copy of our most recent annual report, please use the appropriate link on this page.
This resource has been made possible by continued generous funding from Retina Australia (WA) (since 1984) and from Retina Australia (since 2009). It has been actively supported by Sir Charles Gairdner Hospital and the Department of Medical Technology and Physics, SCGH, since its inception.