Registering to participate
Autoinflammatory diseases, also know as periodic fever syndromes, are an uncommon group of diseases. There are four well-known autoinflammatory disease that have an underlying genetic cause that we test for here in Australia, and in recent years more conditions with features of an overactive immune system have been described.
Why join the registry?
Millions of people around the world have benefited from advances in medical research and your decision to contribute to medical research is a personal one, it is entirely voluntary and you can change your mind and withdraw from the registry at any time.
The organising committee for this registry includes clinicians from each of the major centres in Australia that treat patients with autoinflammatory disease and therefor your doctor may have discussed the registry with you or you may have heard about us from family members.
Participation in the registry is likely to increase what clinicians and researchers know about a specific condition, help improve treatment, and allow researchers to design better studies on a particular condition, including the development and testing of new treatments.
If your doctor informs you about this registry and and possible enrollment, they may ask your permission to have a team member contact you to discuss the project further . A project member will require your contact details to discuss further.
You may contact us directly to find out further details and hospitals involved in the AADRY via email: email@example.com
What we need from you
Joining the registry involves discussing the project with either your doctor or one of the coordinators who will provide all of the information and documentation required for you to join the AADRY.
AADRY will collect epidemiological and clinical data on people with suspected and confirmed autoinflammatory diseases allowing for determination of a number of people with and without a genetic diagnosis for auto inflammatory phenotypes. We may also determine communities with high rates of diagnosis so that resources may be appropriately allocated.
If you don't have an established genetic diagnosis, participation in this project may involve you providing a blood sample. This can usually be collected at the same you are scheduled to have your pathology blood tests for diagnosis or treatment. Once you have donated, your sample will be coded and provided to the medical research team for further analysis and investigation.
The project may involve genetic research, which is the study of genetic material (DNA). This type of research can raise a number of important issues from possible findings that you may need to consider. The team will explain the risks associated with donating blood before you consent to join the AADRY and will answer any questions you may have.
Any information obtained that could identify you will remain confidential be de-identified and can only be accessed by the study team.
Your family's involvement
There may be the need to enroll your biological parents/blood relatives to see if there are any new gene mutations that may have a role in the immune system and hence your disease symptoms. With your permission, we will ask you to provide their contact details and will enroll them too.