What is the purpose of the ARRC Research Database Register?
The Autoimmune Resource & Research Centre (ARRC) is actively involved with providing education, support, and access to clinical treatment and research opportunities focused upon health areas that affect the well-being of individuals with autoimmune problems.
Research cannot occur in these areas without researcher access to volunteer participants diagnosed with an autoimmune illness. For this reason the Autoimmune Resource & Research Centre (ARRC) would like to establish and maintain a central database register of autoimmune patients that may be interested in contributing and participating to future ARRC research projects.
The establishment and maintenance of a register of autoimmune patients interested in participating in new research projects would reduce the time that it takes to recruit study participants to new research projects being undertaken by the ARRC.
If you agree to be registered on the ARRC Research Database, your contact details, along with individual information such as medical symptom and diagnosis information, as well as lifestyle factor information such as smoking and exercise history, will be collected and stored within secure electronic files. This type of information is generally asked for in all research projects and collecting this information within the initial setup of the database reduces the need for you to repeat this information in each future research project you decide to participate in.
All database information will be stored in accordance with the NSW Health Records and Information Privacy Act 2002, which insures the following:
Who can join the ARRC Research Database Register
To be registered with the ARRC Research Database Register you must be aged 18 years or over and been diagnosed with one or more of the following autoimmune illnesses: lupus, scleroderma, CREST, sjogren’s, thyroiditis, coeliac disease or vasculitis.
What’s involved with registering for the ARRC Research Database Register?
If you agree to be registered with the ARRC Research Database Register the Database Register Coordinator may invite you, to participate in one or more research projects. At the time you are notified of a new research project, the coordinator will send you detailed information regarding the new project and invite you to participate. You will then be able to choose whether you want to participate or not. Your choice to participate in any project is completely voluntary and you may refuse or withdraw your consent at any stage without having to provide a reason.
How do you register
If you are interested in participating in the ARRC Research Database Register please contact us on HNELHD-ARRC@hnehealth.nsw.gov.au
Once you have registered the coordinator will post to your mailing address the information and consent form and the specially designed questionnaire form which will need to be completed and returned to the coordinator in the address envelope provided.