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

http://www.swissnationalcohort.ch/

Contact email
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

12

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

No

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

No

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

No

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

No

17. Is information on biological characteristics available to other groups
  • No

Types: Population Cohorts
Member States: Switzerland
Diseases: Prion disease
Years: N/A
Database Categories: N/A
Database Tags: N/A

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