Title of the cohort
Cognitive Complaints Cohort – Longitudinal Neuropsychological Assessment
Acronym for cohort
CCC
Name of Principal Investigator
| Title | Professor |
| First name | Alexandre |
| Last name |
Address of institution where award is held
| Institution | Institute of Molecular Medicine |
| Street Address | Av Prof Egas Moniz |
| City | Lisbon |
| Postcode | 1649-028 Lisbon |
Country
- Portugal
Website
http://www.imm.ul.pt/
Contact email
Funding source
1. The cohort includes, or expects to include, incidence of the following conditions
- Alzheimer’s disease and other dementias
When studies on the above condition(s) are expected to become possible
- Already possible
2a. Stated aim of the cohort
predict the stability or evolution to dementia of subjects with cognitive complaints based on a comprehensive neuropsychological evaluation
2b. Features distinguishing this cohort from other population cohorts
detailed neuropsychological and functional evaluation
3a. i) Number of publications that involve use of cohort to date
2
3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)
3b. Publication list/link to where data or publications are accessible (if available)
3c. Information (i.e. research findings) expected to be gained from the population cohort
4a. Study criteria: age range of participants at recruitment
| Age in years from: | older than 50 |
| To (‘until death’ if applicable): |
4b. Study criteria: inclusion criteria
cognitive complaints
detailed neuropsychological testing
non-demented
4c. Study criteria: exclusion criteria
dementia
neurological, psychiatric, medical disorders that cause cognitive impairment
drugs interfering with cognitive function
5. Size of the cohort (i.e. number of participants enrolled)
- 1,000 – 5,000 participants
6a. Measures used to characterise participants
demographic data, medical history, neurological examination, laboratory analyses, brain imaging, neuropsychological and functional evaluation, depressive symptoms assessment
6b. Additional measures for participants with a clinical disorder
6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)
conversion to dementia
7. Study design
- Prospective cohort
8. Cases matched by
- Cognitive function
9a. Does the study include a specialised subset of control participants
- No
9b. If yes, description of specialised subset of control participants
10a. i) Data collection start date
01-01-1999
10a. ii) Data collection end date
10a iii) Data collection for this study is
- Data collection ongoing
- Data analysis ongoing
10b. Plans to continue the cohort study beyond the current projected end date
- Yes – funding applied for
11. Data collected
- Only through the study
12. System in place to enable re-contact with patients for future studies
- Yes (participants have given permission to be re-contacted via the PIs to ask if they would participate in further studies)
13a. Format and availability of data stored in a database
| Yes/No | % available | |
| Data summarised in database | Yes | |
| Database is web-based | ||
| Database on spreadsheet | Yes | |
| Database is on paper | ||
| Other (specify) |
Language used:
english
13b. Format and availability of data held as individual records
| Yes/No | % available | |
| Data held as individual records | Yes | |
| Data is web-based | ||
| Data held on computer based records | Yes | |
| Data held on cards | ||
| Other (specify) |
Language used:
english – portuguese
14a. Are data available to other groups
Yes
14b. Access policy/mechanisms for access if data are available to other groups
- Access through collaboration with PI only
15. Data sharing policy specified as a condition of use
- No requirement to make data publicly available
16a. Are tissues/samples/DNA available to other groups
Yes
16b. i) Description of available tissues/samples/DNA
- Living donors: DNA
16b. ii) Form available tissues/samples/DNA are supplied in
- Primary Samples: Stabilised samples (frozen or fixed)
16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data
Yes
17. Is information on biological characteristics available to other groups
- No