Title of study

    Brain connectivity: the missing link between amyloid and clinical symptoms

    Acronym for cohort

    ADNI and Alzheimer Dementia Cohort

    Name of Principal Investigator - Title

    Dr

    Name of Principal Investigator - First name

    Betty

    Name of Principal Investigator - Last name

    Tijms

    Address of institution -Institution

    Vumc

    Address of institution - Street address

    Boelelaan 1118

    Address of institution - City

    Amsterdam1081 HZ

    Address of institution - Postcode

    Country

    Netherlands

    Website
    Contact email
    Funding source

    ZonMW

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

    Alzheimer's disease and other dementias

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

    Study if grey matter connectivity can be measure progression in preclinical and prodromal Alzheimer's disease

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

    The methodology used to derive predictor variables (i.e., grey matter connectivity) to monitor disease progression.

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

    n/a

    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

    One paper under review on prediction of time to dementia onset based on baseline grey matter connectivity.

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

    50

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

    90

    Q4b. Study criteria: what are the inclusion criteria?

    no diagnosis of dementia, amyloid biomarker data available at first visit, longitudinal structural MRI and clinical information available.

    Q4c. Study criteria: what are the exclusion criteria?

    None

    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 diagnosis amyloid biomarker data

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

    Yes

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

    Yes

    If YES please specify

    neuropsychological testing

    Q7. What is the study design?

    Prospective cohort

    Q8. Are your cases matched by

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

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

    Q10a. Is data collection for this study

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

    Yes - intend to apply for funding

    Q11. Are data collected

    As part of other studies (ADNI and Amsterdam Dementia Cohort)

    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)

    Database is web-based

    % Available

    100

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

    % Available

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

    % Available

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

    % Available

    Please specify language used

    % Available

    99

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

    Data is web-based

    % Available

    99

    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| Access through collaboration with PI only

    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?

    Yes

    Q16b i) If yes, please describe below

    Other unsure - adni data

    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

Types: Case Control Studies
Member States: Netherlands
Diseases: Alzheimer's disease & other dementias
Years: 2016
Database Categories: N/A
Database Tags: N/A

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