Acronym for cohort: LeARN (WP4) - JPND Neurodegenerative Disease Research

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

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)

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