Swiss National Cohort - JPND Neurodegenerative Disease Research

Title of the cohort

Swiss National Cohort

Acronym for cohort

SNC

Name of Principal Investigator

Title	Prof. Dr. med.
First name	Flex
Last name	Gutzwiller

Address of institution where award is held

Institution
Street Address	Sumatrastrasse 30
City
Postcode	8006

Country

Switzerland

Website

The Swiss National Cohort

Contact email

[email protected]

Funding source

Swiss National Science Foundation

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

Prion disease

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

2a. Stated aim of the cohort

The SNC is a long-term, 1990 census based, multipurpose cohort and research platform including currently mortality follow-up and other disease outcomes to be linked to this population in the future.

2b. Features distinguishing this cohort from other population cohorts

That it includes the whole Swiss resident population. Is purely based on record linkage procedures.

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)

http://www.swissnationalcohort.ch/index.php?id=2978

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:	0 to 100
To (‘until death’ if applicable):	until death

4b. Study criteria: inclusion criteria

The whole Swiss resident population at census 1990 updated by census 2000

4c. Study criteria: exclusion criteria

None

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

More than 15,000

6a. Measures used to characterise participants

See the cohort profile:
Bopp M, Spoerri A, Zwahlen M, Gutzwiller F, Paccaud F, Braun-Fahrlaender C et al.
Cohort Profile: The Swiss National Cohort–a longitudinal study of 6.8 million people. Int J Epidemiol 2009;38:379-84.

6b. Additional measures for participants with a clinical disorder

None

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

death as recorded on death certificate

7. Study design

Prospective cohort
Longitudinal

8. Cases matched by

Other health assessment (specify) / N/A
none

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

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

10a. i) Data collection start date

05-12-1990

10a. ii) Data collection end date

31-12-2008

10a iii) Data collection for this study is

Data collection ongoing

10b. Plans to continue the cohort study beyond the current projected end date

Yes – funding applied for

11. Data collected

Through links to other records or registers (such as dental records, police records etc). Please specify
Bopp M, Spoerri A, Zwahlen M, Gutzwiller F, Paccaud F, Braun-Fahrlaender C et al. Cohort Profile: The Swiss National Cohort–a longitudinal study of 6.8 million people. Int J Epidemiol 2009;38:379-84. PDF

12. System in place to enable re-contact with patients for future studies

13a. Format and availability of data stored in a database

	Yes/No	% available
Data summarised in database	Yes
Database is web-based	No
Database on spreadsheet	No
Database is on paper	No
Other (specify)

Language used:

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

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

Language used:

German, French, Italian, English

14a. Are data available to other groups

Yes

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

Access Committee mechanism
Applicant needs to provide separate external ethics approval
Other criteria (please specify)
Legal contracts with Swiss Federal Office of Statistics

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

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