Cognitive Complaints Cohort – Longitudinal Neuropsychological Assessment

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
[email protected]
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

Cognitive Complaints Cohort – Longitudinal Neuropsychological Assessment

Population Cohorts
Portugal
Alzheimer’s disease & other dementias
2011

 

 

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