Aged 50 and over, residents in Zaragoza province - JPND Neurodegenerative Disease Research

Title of the cohort

Aged 50 and over, residents in Zaragoza province

Acronym for cohort

DISCAPARAGON

Name of Principal Investigator

Title	Dr.
First name	JESUS
Last name	DE PEDRO-CUESTA

Address of institution where award is held

Institution	CARLOS III INSTITUTE OF HEALTH. National Centre of Epidemiology
Street Address	Monforte de Lemos 5, Pabellon 12
City	MADRID
Postcode	28029

Country

Spain

Website

www.isciii.es

Contact email

[email protected]

Funding source

FIS, CIBERNED

1. The cohort includes, or expects to include, incidence of the following conditions

Neurodegenerative disease in general

When studies on the above condition(s) are expected to become possible

2a. Stated aim of the cohort

1216 persons studied in 2008 and approximately the same will be studied by end of 2011

2b. Features distinguishing this cohort from other population cohorts

Strong emphasis on disability and health and social service development. WHO ICF methodology. Coverage of rural and urban populations. Cognitive and disability screened

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:	>49 years
To (‘until death’ if applicable):

4b. Study criteria: inclusion criteria

residents for >1 year, aged >49 at recruitment

4c. Study criteria: exclusion criteria

No identification as person entitled to use of state run health care use.

5. Size of the cohort (i.e. number of participants enrolled)

1,000 – 5,000 participants

6a. Measures used to characterise participants

Cognitive and disability screenings were conducted using MMSE and the World Health Organization Disability Assessment Schedule. Participants screened positive for disability underwent an assessment protocol focusing on primary care diagnoses, disability, lifestyle, and social and health service usage.

6b. Additional measures for participants with a clinical disorder

No when no disability is recorded

6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)

7. Study design

Cross sectional survey

8. Cases matched by

Other health assessment (specify) / N/A
No matching exists

9a. Does the study include a specialised subset of control participants

9b. If yes, description of specialised subset of control participants

Persons negative to disability screening or persons with only minor disability as per WHODAS-2 36

10a. i) Data collection start date

01-06-2008

10a. ii) Data collection end date

01-06-2009

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
Through links to medical records
Through links to other records or registers (such as dental records, police records etc). Please specify
prmary care computer fiels

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	NO
Database on spreadsheet	NO
Database is on paper	YES	80%
Other (specify)

Language used:

Spanish

13b. Format and availability of data held as individual records

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

Language used:

Spanish

14a. Are data available to other groups

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

Other criteria (please specify)
When data at urban areas are available access may change

15. Data sharing policy specified as a condition of use

No policy exists

16a. Are tissues/samples/DNA available to other groups

16b. i) Description of available tissues/samples/DNA

16b. ii) Form available tissues/samples/DNA are supplied in

16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data

17. Is information on biological characteristics available to other groups