Acronym for cohort: LeARN (WP4)

Title of the cohort

Acronym for cohort
LeARN (WP4)
Name of Principal Investigator

Title	prof. dr.
First name	Frans
Last name	Verhey

Address of institution where award is held

Institution	Alzheimer Center Limburg
Street Address	Dr. Tanslaan 12
City	Maastricht
Postcode	6229 ET

Country
Netherlands
Website
www.alzheimercentrumlimburg.nl
Contact email
[email protected]
Funding source
Government, industry and universities
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
2011 – 2015
2a. Stated aim of the cohort

2b. Features distinguishing this cohort from other population cohorts

3a. i) Number of publications that involve use of cohort to date
0
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:	55
To (‘until death’ if applicable):

4b. Study criteria: inclusion criteria

4c. Study criteria: exclusion criteria

5. Size of the cohort (i.e. number of participants enrolled)
1,000 – 5,000 participants
6a. Measures used to characterise participants
Demographic data, clinical data, Mini Mental State Examination, Clinical Dementia
Rating Scale, Neuropsychiatric Inventory, Disability Assessment for Dementia Scale,
Geriatric Depression Scale, EuroQol-5D
6b. Additional measures for participants with a clinical disorder
MRI (including DTI and resting state fMRI), PET (FDG and PiB-PET), CSF
6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)
No
7. Study design

• Prospective cohort

8. Cases matched by

• Cognitive function

9a. Does the study include a specialised subset of control participants
Yes
9b. If yes, description of specialised subset of control participants
Patients with only subjective memory complaints will be controls for patients with objective memory complaints
10a. i) Data collection start date
01-11-2009
10a. ii) Data collection end date
01-05-2011
10a iii) Data collection for this study is
Data analysis ongoing
10b. Plans to continue the cohort study beyond the current projected end date
Yes – intend to apply for funding
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	100
Database is web-based	yes	100
Database on spreadsheet	yes	100
Database is on paper	yes	100
Other (specify)

Language used:
Dutch
13b. Format and availability of data held as individual records

	Yes/No	% available
Data held as individual records	yes	100
Data is web-based	yes	100
Data held on computer based records	yes	100
Data held on cards	no
Other (specify)

Language used:

14a. Are data available to other groups
Yes
14b. Access policy/mechanisms for access if data are available to other groups

• Apply to PI or co-ordinator at resource

15. Data sharing policy specified as a condition of use
Data made publicly available after a specified time point
16a. Are tissues/samples/DNA available to other groups
Yes
16b. i) Description of available tissues/samples/DNA

• Living donors: cerebro-spinal fluid

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

• Yes, for all the cohort

Acronym for cohort: LeARN (WP4)

Population Cohorts
Netherlands
Alzheimer’s disease & other dementias