Information for participants

The PATH project examines cognitive development and mental health from early to late adulthood, and is one of the only longitudinal lifespan studies in Australia. The PATH project is unique internationally and the contribution of participants is essential to progress the study. Thank you to all the individuals who’ve given up their time to participate in this study, we greatly appreciate your continued involvement.  Without volunteers this important research into mental health and wellbeing could not continue. The data collected is already informing key areas of health and social policy.

Wave 5 is Underway!

The fifth wave is a critical wave for PATH as it represents the point at which each cohort enters the baseline age of the next cohort, allowing comparisons of health and wellbeing between cohorts at the same age. If you have any questions, please contact our Survey Manager, Dr Carly Pymont (Phone: + 61 2 6125 9749 Email: carly.pymont@anu.edu.au)

PATH Exhibition

We are asking PATH participants to volunteer to be photographed and interviewed about their PATH, and life, experiences for an exhibition that may travel to conferences in Australia and overseas. This is a voluntary project to help raise awareness of PATH and the importance of ageing research. Contact the PATH Data Manager, Imogen Gad (Phone: +61 2 6125 8408 Email: path@anu.edu.au) if you have any questions, would like to volunteer or update your details.
 

 

Participant frequently asked questions

 

How was I selected to take part in the PATH project?

The Australian Electoral Commission (AEC) is allowed by law to provide the name and address details of enrolled voters to research institutions for approved medical research purposes. Following application to be allowed access to the Electoral Roll, the AEC provided us with a list of names and addresses from within the age ranges requested. These lists were from the three Federal electorates that make up the ACT and the electorate of Eden-Monaro. From this latter Electorate we selected only those who gave Queanbeyan as their residential address.

At the time of requesting the Electoral Roll data for the 20-24 year olds and 40-44 year olds, legislation would only allow release in 10-year age groups. Electoral Roll data was therefore provided on 20-29 year olds and 40-49 year olds. 

Those not in the required age group were excluded from the sample following contact with an interviewer, who ascertained their age. By the time data on the oldest age group was requested (2001), the legislation had changed and Electoral Roll data for a specific 60-64 year olds cohort was able to be obtained.

From the names provided we selected a random sample of people to invite to take part in the project.

 

How many people are still taking part in the project?

On completion of the first ‘Wave’ of interviewing we had interviewed 2404 people in the 20+ group, 2530 people in the 40+ age group and 2551 people in the 60+ age group.

At the time of the second interview (Wave 2), 2139 (89 per cent) of those in the 20+ group were re-interviewed, 2354 (93 per cent) of the 40+ group and 2222 (87 per cent) of the 60+ age group. At the third interview (Wave 3), 1978 (82 per cent) of those in the 20+ group were re-interviewed, 2182 (86 per cent) of the 40+ group and 1973 (77 per cent) of the 60+ age group. We have completed the fourth wave of interviewing (Wave 4), 1286 (53 per cent) of the 20+ age group, 1806 (71 per cent) of the 40+ age group and 1645 (64 per cent) of the 60+ age group participants were interviewed. 

Quite a number of participants, particularly in the 20+ group, had moved away from the Canberra area to other parts of Australia or overseas. Most of those in other parts of Australia were able to be interviewed and many others, including those overseas completed the questionnaire by mail, email or online.

Currently, we are preparing for Wave 5 and will be interviewing participants in the 20+ group (now aged in their 40s) in early 2017.

 

What happens to my cheek swab?

When you rub the inside of your cheek with the brush provided, cells from your skin get transferred to the brush. Once a cheek swab has been taken, it is frozen as quickly as possible, and then taken to the John Curtin School of Medical Research at ANU where the DNA is extracted from it. This DNA contains all of the genetic instructions or ‘genes’ needed for developing and maintaining your body. In general terms, a gene is a section of DNA which defines a characteristic or trait. Genes, however, often vary between individuals, leading to differences in characteristics between people, eg eye colour, blood group. 

Sometimes people are born with an error in one of their genes which results in an illness or disability. In some cases people only develop an illness if they inherit the same ‘bad’ gene from both parents eg muscular dystrophy. In these conditions usually only one gene is involved and the person will definitely develop the condition if they inherit it from both parents.

However, the types of genes the PATH project is interested in are different. We are interested in looking at genes that may influence the development of common mental disorders such as anxiety and depression. For these sorts of conditions a combination of genes is responsible. In fact, the development of these conditions is thought to be influenced not only by a number of different genes but also by things that happen to people in their lives. So someone with a variation of a gene that may predispose them to depression my never actually become depressed because no life events occur that may trigger the illness.

 

Can I get my genetic results?

A consequence of examining these types of genes, is that providing you with information on your gene types will not tell you that you are likely to develop an illness as this will be dependant on a lot of other factors. It is possible, however, that research organisations looking at the same genes as us may discover a function of a gene that could have a more direct importance to your health. In this case, we will ask you if you wish to be notified, either directly or through your general practitioner, about your individual results.

 

How do you keep the PATH information secure?

All of the personally identifiable information (eg name, contact details) that we have about our participants is kept on a secure database that can only be accessed by the Principal Investigator and Data Manager. 

The interviewers are required to have information containing your names and contact details. This information is stored on a password protected laptop and not left unattended in their cars, which is then deleted once interviewing is complete.

You will have noticed that you have been assigned an ID number. Once you have completed a PATH interview all of the information is identified by ID only. This ID can only be matched to your name using the database discussed above.

Updated:  23 September 2017/Responsible Officer:  Director/Page Contact:  Business Manager