Title of cohort


Personality and Total Health (PATH) Through Life (20s Cohort)

Acronym for cohort


PATH 20s

Name of Principal Investigator - Title


Prof

Name of Principal Investigator - First name


Kaarin

Name of Principal Investigator - Last name


Anstey

Address of institution -Institution


The Australian National University, Centre for Research on Ageing, Health and Wellbeing

Address of institution - Street address


Florey Building, 54 Mills Rd, ACTON

Address of institution - City


Canberra

Address of institution - Postcode


2601

Country


Austrailia

Website


http://crahw.anu.edu.au/research/projects/personality-total-health-path-through-life

Contact email


[email protected] or [email protected]

Funding source


National Health and Medical Research Council

Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?


Neurodegenerative disease in general

Q1b. When are studies on the above condition(s) expected to become possible?


Already possible

Q2a. In a single sentence what is the stated aim of the cohort?


To track and define the course of depression, anxiety, substance use and cognitive ability, identify environmental risk and protective factors within these domains, and examine the relationships between depression, anxiety and substance use with cognitive ability and dementia from early to mid adulthood.

Q2b. What distinguishes this cohort from other population cohorts?


Narrow age cohort followed up over a long amount of time with data enhanced by substudies including physical and genetic testing and neuroimaging

Q3a. i) Number of publications that involve use of your cohort to date


Q3a.ii) Please give up to three examples of studies to date (Principal Investigator, Institution, Title of Study)


Q3b. If data on research outputs are already available please paste the publication list/other data or provide a link to where these data are publicly available


http://crahw.anu.edu.au/research/projects/personality-total-health-path-through-life/published-papers

Q3c. If no research has been done as yet, please explain in a few sentences what information (i.e. research findings) you expect will be gained from the population


Q4a. Study criteria: what is the age range of participants at recruitment? Age in years From:


20

Q4a. Study criteria: what is the age range of participants at recruitment? To:


24

Q4b. Study criteria: what are the inclusion criteria?


Registered on the Australian Electoral Roll in the ACT or Queanbeyan (NSW) and aged between 20-24 years at recruitment

Q4c. Study criteria: what are the exclusion criteria?


Out of age range for this cohort (<20 & >24)

Q5. What is the size of the cohort (i.e. how many participants have enrolled)?


1,000-5,000 participants

Q6a. Please describe what measures are used to characterise participants


Demographics, lifestyle, mental health and psychological scales, cognitive and physical tests

Q6b. Are there additional measures for participants with a clinical disorder?


Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?


No

If yes please specify


Q7. What is the study design (select all that apply)?


Longitudinal| Prospective cohort

Q8. Are your cases matched by


Age

Q9a. Does your study include a specialised subset of control participants?


No

Q9b. If your study includes a specialised subset of control participants please describe


Q10a. i) Please enter the data collection start date


01/01/1999

Q10a. ii) Please enter the data collection end date


01/01/2019

Q10a. iii) Is data collection for this study


Data collection ongoing| Data analysis ongoing| Closed to new patients

Q10b. If data collection is ongoing, are there plans to continue the cohort study beyond the current projected end date?


Q11. Is data collected


Through the study and by links to medical records

Other please specify here


Q12. Is there a system in place to enable re-contact with patients to ask about participation in future studies?


Yes (participants given permission to be re-contacted via PIs)

Q13a. Please give information on the format and availability of data stored in a database (1)


Data summarised in database

% available


100

Q13a. Please give information on the format and availability of data stored in a database (2)


No

% available


Q13a. Please give information on the format and availability of data stored in a database (3)


Database on spreadsheet (e.g. excel)

% available


100

Q13a. Please give information on the format and availability of data stored in a database (4)


No

% available


Other (please specify)


% available


Q13b. Please give information on the format and availability of data held as individual records (1)


Data is held as individual records

% available


100

Q13b. Please give information on the format and availability of data held as individual records (2)


No

% available


Q13b. Please give information on the format and availability of data held as individual records (3)


Data held on computer based records

% available


100

Q13b. Please give information on the format and availability of data held as individual records (4)


No

% available


Please specify language used


English

Q14a. Is data available to other groups?


Yes

Q14b. If data is available to other groups what is the access policy/mechanisms for access?


Apply to PI or co-ordinator at resource| Access committee mechanism

Q15. What data sharing policy is specified as a condition of use?


No requirement to make data publicly available

Q16a. Are tissues/samples/DNA available to other groups?


No

Q16b i) If yes, please describe below:


Q16b. ii) In what form are tissues/samples/DNA supplied?


Q16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q14 above)?


Q17. Is information on biological characteristics available to other groups?


Yes, for all the cohort

Number of Patients


% of total cohort

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