Your Privacy

The security of our participants data is something we take very seriously and any researcher that accesses your de-identified data goes through a rigorous protocol.

  • Taking part in the project is voluntary and you are free to withdraw at any time.
  • You will not be identified from the research – researchers do not see your name with your information.
  • Every research project is checked to make sure it meets the highest scientific and ethical standards.
  • In the same way as a doctor who treats you is bound to keep your information confidential, the Raine Study team, and all the researchers we work with, are bound to keep your information confidential.

Your Data

The Raine Study takes its responsibility for the protection of participant information very seriously and has established strict data security measures and protocols to minimise the risk of participant contact details being accessed by any unauthorised personnel. 

Follow-up data are collected and stored as deidentified data sets, which have no Personal Identifiable Information (PII) about participants. The data are stored on UWA resources and can only be accessed by Raine Study staff while on the UWA network. Connections from data storage to staff computers utilise Microsoft’s file-sharing encryption.

Personal Identifiable Information (PII) is stored on an isolated database to minimise the risk of exposure. The database is in a secure data centre located on the UWA Campus. Access to the database is restricted to a small number of the Raine Study team and only from specific computers at the offices of the Raine Study. The connection between staff computers and the database utilises AES-256 encryption to keep the connection secure. No external access to the server is permitted.

Data is accessed, managed and stored according to the governance protocols outlined in the Raine Study Researcher Engagement Policy. All identifiable data is retained in a secure location and is not permitted to come into the possession or control of any other organisation or any individual unless required to do so by law. Only de-identified datasets (where we have removed identifying information) will be provided for scientific research, and then only for approved projects and approved investigators. Data can only be used to carry out the specific scientific research following approval by the Scientific Review Committee and with appropriate ethical approval. Only investigators approved by the Raine Study for a specific project can access the data for that specific project. Data is stored according to strict security and confidentiality protocols detailed in the Raine Study Access Protocol and in according to the legislation, codes and guidelines detailed in the Data Confidentiality Protocols.

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