The privacy of members is really important to us. We're committed to being transparent about how we treat your data so our privacy policies are accessible on our website in clear language.  The Foundation operations under the Privacy Act 1988 of Australia.  https://www.oaic.gov.au/privacy-law/privacy-act/

 

While using our Site, you will be given the opportunity to provide certain personally identifiable information that can be used to contact or identify you. Personally identifiable information may include, but is not limited to your name and contact information.

We may use your personal information to contact you with newsletters and information relevant to 22q11.2 deletion syndrome. We may also use this personal information to contact you about current research projects that you may be interested in. We will not share your personal information with researchers, or any other third parties, rather researchers from recognised scientific organisations with evidenced human ethics approval from an institutional review board/ethics committee, will be able to apply to the Foundation to have their research communicated to potential participants as per their ethics approval.  Upon approval from the Foundation, brief information pertaining to the research studies will be provided to you using your personal information. Participation in the studies are voluntary and you will need to contact the relevant researcher if you wish to participate. These studies are run independently from the Foundation. The Foundation will not be informed if you choose to participate in the research or not. The Foundation will not be provided with any data acquired from the researchers. All researchers will be required to provide a summary of the overall research findings that will be communicated via our website or social media accounts. No personal information will be included in this communication.  

 

De-identified data collected via this app may be used for research purposes. Researchers from recognised scientific organisations with evidenced human ethics approval from an institutional review board/ethics committee, will be able to apply to the Foundation, to access specific information collected from the app as per their ethics approval. All information provided to the researchers will be de-identified, that is researchers will not be provided with your name, contact information or other information that will identify you.  They may be provided with the date of birth to ascertain age. In some instances, as per their ethics approval, researchers may wish to collect additional data to supplement the data available from the app. If so, the Foundation will send you an invitation to participate in the particular study, participation in the studies are voluntary. The invitation will include a unique identifier that you will need to include in your communication with the researcher, if you choose to participate in the research. This unique identifier will allow the researcher to link the data from the app with the additional information supplied by you. The research will help towards furthering the scientific understanding of the syndrome. These studies are run independently from the Foundation. The Foundation will not be informed if your data is included in the research or not. All researchers will be required to provide a summary of the overall research findings that will be communicated via our website or social media accounts. No personal information will be included in this communication.  

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We will endeavour to take all reasonable steps to ensure your personal information is kept secure, accurate and up to date. Your information is stored on secure servers that are protected in controlled facilities. Unfortunately, no data transmission over the Internet can be guaranteed to be 100% secure. So, while we make use of available technology, such as encryption software in taking reasonable steps to protect your personal information, we cannot give an absolute assurance that the information you provide to us will be secure at all times. You accordingly do so at your own risk and we will not be held responsible for events arising from unauthorised access to your personal information.