Information for participants

The Link-Up Project

The Link-Up Project is the next stage of the 45 and Up Study. The aim of the Link-Up Project is to collect further information from people who are already participating in the 45 and Up Study.

The Link-Up Project is not a separate study, but an extension of the 45 and Up Study. All of the information collected as part of the Link-Up Project will be linked to the information already collected by the 45 and Up Study, to make it an even more valuable contribution to health research.

Funding for the Link-Up Project has been generously provided by Cancer Council NSW.

Information Being Collected

45 and Up Study participants who enrol in the Link-Up Project will be asked to:

  • Complete a very brief questionnaire about their current health
  • Provide a small blood sample (less than 2 tablespoons / 30ml)
  • Have their height, weight, waist circumference, blood pressure and heart rate measured.

How We Use the Information and Blood Sample

The information and blood samples collected in the Link-Up Project will be linked to the health information that participants have already given to the 45 and Up Study and to information from health and other records that they have allowed the 45 and Up Study to access. These include NSW hospital records, cancer records, Medicare and other records.

Information and blood samples will be used for health research only for:

  • Approved research projects to investigate factors affecting the health of Australians in mid to later life.
  • Looking at a very wide range of factors able to be measured in blood, such as cholesterol, antibodies and blood sugars.
  • Investigation of genetic factors, such as the structure and function of certain genes, and how they relate to a range of illnesses and other conditions.

In order to develop new treatments and diagnostic tests, it is also possible that researchers from commercial organisations may apply to use the information and blood samples collected. All research projects must demonstrate that they are in the public interest and have the potential to provide important information to improve health.

Results from physical measurements will be provided to participants, but no results from the blood samples or other tests will be given to participants or their doctor (even if the results do not seem to be normal). This is because outside of a normal clinical setting this kind of feedback is of questionable value and may even be harmful (for example, causing undue alarm).

Blood samples will generally not be analysed immediately following collection. Instead, over the next decades, samples will be stored securely and then analysed as needed for approved health research as part of the 45 and Up Study.

We Will Provide Updates

The 45 and Up Study keeps all participants in the study up to date about how their information is being used (including information collected as part of the Link-Up Project) through the annual Participants' Newsletter. A full list of research projects that have been approved is also available here.

Our Commitment to Security and Confidentiality

All information and blood samples provided to the 45 and Up Study are bound by Commonwealth and State privacy legislation and guidelines, including the Health Records Information Privacy Act and the NSW Health Privacy Manual. Our commitment to providing a high standard in handling personal information includes:

  • Working with the University of NSW Human Research Ethics Committee, which is responsible for overseeing the conduct of the Link-Up Project and the 45 and Up Study.
  • Ensuring information is used for health research only.
  • Ensuring your identifying information, such as name and address, is removed and stored separately as soon as possible.
  • Ensuring information is not released in a way that would allow an individual or household to be identified, except as is compelled by law.

How to Participate in the Link-Up Project

As the Link-Up Project is an extension of the 45 and Up Study, only people who are already participating in the 45 and Up Study can enrol.

The 45 and Up Study is beginning by inviting only a small number of people to participate in the Link-Up Project. From late June 2009 a random selection of participants who live within 20km of Wagga Wagga and 10 km of Parramatta, will be randomly selected and sent an invitation letter. The letter will include details of when and where to go to provide the blood sample and have physical measurements taken.

The ultimate aim of the 45 and Up Study is to invite all participants in the study to enrol in the Link-Up Project. At this stage, we are not asking for volunteers though.

How to Accept the Invitation

If you have received an invitation to participate in the Link-Up Project and you would like to accept, all you need to do is follow the instructions on you invitation letter, or you can call the 45 and Up Study Infoline on 1300 45 11 45 for more information.

How to Decline the Invitation

The Link-Up Project is entirely voluntary. If you have received an invitation to participate in the Link-Up Project and you would like to decline, you can do so and still remain in the 45 and Up Study.  It would be helpful if you could let us know that you will declining the invitation by calling the 45 and Up Study Infoline on 1300 45 11 45

More Information

If you would like more information about the Link-Up Project you can call the 45 and Up Study Infoline on 1300 45 11 45.

To view the Link-Up Project information leaflet for participants click here.