The 45 and Up Study Group

FAQs

• What information is given to participants?

  All participants receive a copy of the Information for Participants leaflet, a copy of the Study questionnaire (for either men or women) and a reply-paid envelope to return the completed questionnaire.

   

• How is participants' information kept confidential?

  The 45 and Up Study is bound by Commonwealth and State privacy legislation, including the Health Records and Information Privacy Act and the NSW Health Privacy Manual. All information collected will be treated with absolute confidentiality and used for health research only.

  No information will be released in a way that would enable an individual or household to be identified, except as is required by law. Information gathered will be stored, analysed and reported on with all individual identifying details removed to ensure total security, confidentiality and anonymity.

  In addition to meeting Commonwealth and State legal requirements, the Study is overseen by an independent Strategic Advisory Committee and the University of NSW's Human Research Ethics Committee to guarantee complete security, confidentiality and anonymity of participants.

• Who can access the Study information and how?

  No information held by the 45 and Up Study will be released in any way that would enable an individual or household to be identified. Any information gathered is stored with all individual identifying details removed to ensure total security, confidentiality and anonymity. Personally identified information that the Study holds will only be released with the participant's consent or as required by law.

  Researchers providing advice to the Study do not have any direct access to information the Study collects from questionnaires or from sources of routinely collected health information.

  To access any Study information all researchers, including the founding collaborators, must get approval by going through a rigorous process. They must prove that their proposed use of the Study information is credible and also must seek approval from independent ethics committees, review by other experts and the Study Scientific Advisory Committee.

  Only after successfully meeting all these requirements will a researcher be able to access Study information and once their research is finished they will destroy their copy of the information.

  All staff working on the Study sign confidentiality agreements and follow strict protocols and procedures to ensure the data and information is protected. The Study is located in an area within a security building where access is restricted only to Study staff.