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

mendonca@fm.ul.pt

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

Types: Population Cohorts
Member States: Portugal
Diseases: Alzheimer's disease & other dementias
Years: 2011
Database Categories: N/A
Database Tags: N/A

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