Title of study

    Clinical, imaging and biological investigations of frontotemporal dementia and related conditions

    Acronym for cohort

    FRONTIER

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Oliver

    Name of Principal Investigator - Last name

    Piguet

    Address of institution -Institution

    Sydney University

    Address of institution - Street address

    94 Mallett St

    Address of institution - City

    Sydney

    Address of institution - Postcode

    2050

    Country

    Australia

    Website
    Funding source

    NHMRC and ARC

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

    Alzheimer's disease and other dementias|Motor neurone diseases

    Q2a. In a single sentence what is the stated aim of the study? (Maximum 30 words)

    Improving diagnosis, prognosis and clinico-pathological correlations of frontotemporal dementia and related neurodegenerative brain conditions

    Q2b. What distinguishes this case-control study from other studies?

    Comprehensive investigations of these disorders that include clinical, cognitive, neuroimaging, biological and genetic investigations with brain banking for pathological confirmation

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

    >100

    Q3a. ii) Please give up to three examples of studies to date (PI, 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

    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 case-control study

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

    >18

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

    until death

    Q4b. Study criteria: what are the inclusion criteria?

    clinical diagnosis of frontotemporal dementia or presence of causative mutation for the disease

    Q4c. Study criteria: what are the exclusion criteria?

    Other CNS related conditions; mental disorders; TBI; history of subtance abuse

    Q5a. What is the size of the cohort (i.e. how many participants have enrolled)?

    1-1,000

    Q5b. What is the expected number of control participants?

    200-500

    Q6a. Please describe what measures are used to characterise participants

    Clinical, cognitive, neuroimaging, biological investigations

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

    genetic screening

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

    No

    If YES please specify

    Q7. What is the study design?

    Prospective cohort|Retrospective cohort|Age|Sex

    Q8. Are your cases matched by

    Cognitive function

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

    No

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

    Q10a. Is data collection for this study

    Data collection ongoing|Data analysis ongoing

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

    Yes - funding applied for

    Q11. Are data collected

    Only through the study|Through links to medical records

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

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

    Q13a. Please give information on data stored in a database (1)

    Data summarised in database

    % Available

    100

    Q13a. Please give information on data stored in a database (2)

    No

    % Available

    Q13a. Please give information on data stored in a database (3)

    No

    % Available

    Q13a. Please give information on data stored in a database (4)

    No

    % Available

    Q13a. Please give information on data stored in a database (5)

    No

    % Available

    Please specify language used

    % Available

    100

    Q13b. Please give information on how data is held as individual records

    No

    % Available

    Q14a. Are 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|Local/ regional access|National access|International access|Resource has own ethics approval so usually no need for separate external ethics approval

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

    No policy exists

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

    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?

    No

Types: Case Control Studies
Member States: Australia
Diseases: Alzheimer's disease & other dementias, Motor neurone diseases
Years: 2016
Database Categories: N/A
Database Tags: N/A

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