Title of cohort

    Amsterdam Dementia Cohort

    Acronym for cohort

    ADC

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Phillip

    Name of Principal Investigator - Last name

    Scheltens

    Address of institution -Institution

    Vumc

    Address of institution - Street address

    de Boelelaan 1118

    Address of institution - City

    Amsterdam

    Address of institution - Postcode

    1081 HZ

    Country

    Netherlands

    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

    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?

    Study biomarkers, progression markers, etiology, protective factors

    Q2b. What distinguishes this cohort from other population cohorts?

    Clinical patient cohort, naturalistic data

    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

    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

    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:

    n/a

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

    n/a

    Q4b. Study criteria: what are the inclusion criteria?

    not applicable, all patients who visit our center enroll in amsterdam dementia cohort

    Q4c. Study criteria: what are the exclusion criteria?

    none

    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

    Clinical data, biomarker data, mri, eeg, meg ,neuropsychology

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

    Possibly

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

    If yes please specify

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

    Other

    Q8. Are your cases matched by

    Other health assessment

    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

    01/01/2000

    Q10a. ii) Please enter the data collection end date

    unknown

    Q10a. iii) 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 - intend to apply for funding

    Q11. Is data collected

    Through 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

    90

    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)

    No

    % available

    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

    90

    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

    90

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

    No

    % available

    Please specify language used

    Dutch and 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?

    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?

    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

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

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