Retina Australia have recently funded the establishment of an Australian Inherited Retinal Disease Register and DNA Bank, to be created as an extension of the existing equivalent Western Australian resource, which in turn was created as a result of continuous funding from Retina Australia (WA) since 1984.
The Register and DNA Bank will be made available to approved clinicians and researchers who are active in the field of inherited retinal disease research, particularly in the rapidly advancing area of development of gene-specific therapies.
If you have been diagnosed with an inherited retinal disease, you are invited to participate in this project by donating your DNA in the form of a small amount of blood or saliva, and by answering some questions regarding your condition and family history. Your affected or unaffected blood relatives may also wish to participate.
It is anticipated that by the end of 2011 the DNA Bank will house more than 3000 DNA samples from affected subjects and their family members, with accompanying information. Some of this information is published on a website that you can access, showing for each (unidentified) DNA sample the best diagnosis, the genetic mutation (if identified) and the Australian state of origin. The website is updated every 3 months.
When you donate DNA in the form of blood or saliva for this project your DNA will be extracted from the sample of blood or saliva, and then frozen for future analysis. In some cases the frozen DNA will undergo genetic analysis in the weeks or months after you have donated it, while in other cases it may not undergo analysis for one or two years. When your DNA is analysed, no information linking you with the results of the analysis is released to any other party without your written permission. You do not give this permission at the time we collect your DNA.
The DNA that you donate will be of great benefit in furthering research into the causes of inherited retinal diseases in Australians, and in facilitating the introduction of gene-specific therapies. Your participation is greatly valued for this reason. It is possible that your participation will be of little or no short-term benefit to you, although in some cases you may be contacted in the future if analysis of your DNA reveals that you may benefit from genetic counselling (for example if you are a possible candidate for a clinical trial).
To express interest in participating in this project, please fill out the Expression of Interest Form, and mail it to the address indicated on the form.
Read the latest report on this research here – IRDR & DNA Bank Sept 2012 Report