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
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
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