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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
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
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
Swiss National Cohort
Population Cohorts
Switzerland
Prion disease
