Cohort of Norway

Title of the cohort
Cohort of Norway
Acronym for cohort
CONOR
Name of Principal Investigator

Title Adviser and CONOR Coordinator
First name  Kjersti
Last name Andersen Nerhus

Address of institution where award is held

Institution The Norwegian Institute of Public Health
Street Address P.O.Box 4404 Nydalen
City Oslo
Postcode NO-0403

Country
Norway
Website
http://www.fhi.no/eway/default.aspx?pid=238&trg=MainArea_5811&MainArea_5811=5903:0:15,4220:1:0:0:::0:0
Contact email
[email protected]
Funding source
The Research Council of Norway and other national and international funding sources.
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
Already possible
2a. Stated aim of the cohort
CONOR is a collection of health data and blood samples from several Norwegian health surveys. When the data collection is complete, CONOR will be a unique database with health data and biological samples of about 200 000 individuals. The purpose of CONOR is investigating the causes of disease.
2b. Features distinguishing this cohort from other population cohorts

3a. i) Number of publications that involve use of cohort to date
0
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:
To (‘until death’ if applicable): 100

4b. Study criteria: inclusion criteria
http://www.fhi.no/eway/default.aspx?pid=238&trg=MainArea_5811&MainArea_5811=5903:0:15,4220:1:0:0:::0:0
4c. Study criteria: exclusion criteria
http://www.fhi.no/eway/default.aspx?pid=238&trg=MainArea_5811&MainArea_5811=5903:0:15,4220:1:0:0:::0:0
5. Size of the cohort (i.e. number of participants enrolled)
More than 15,000
6a. Measures used to characterise participants
http://www.fhi.no/eway/default.aspx?pid=238&trg=MainArea_5811&MainArea_5811=5903:0:15,4220:1:0:0:::0:0
6b. Additional measures for participants with a clinical disorder

6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)
http://www.fhi.no/eway/default.aspx?pid=238&trg=MainArea_5811&MainArea_5811=5903:0:15,4220:1:0:0:::0:0
7. Study design

  • Cross sectional survey
  • Other (please specify)
  • A collection of population cohorts

8. Cases matched by

  • Age
  • Sex
  • Co-morbidities
  • Cognitive function
  • Physical ability
  • Other health assessment (specify) / N/A
  • http://www.fhi.no/eway/default.aspx?pid=238&trg=MainArea_5811&MainArea_5811=5903:0:15,4220:1:0:0:::0:0

9a. Does the study include a specialised subset of control participants
Yes
9b. If yes, description of specialised subset of control participants
CONOR is a collection of population cohorts.
10a. i) Data collection start date
01-03-2011
10a. ii) Data collection end date

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

11. Data collected

  • Through links to medical records
  • Through links to other records or registers (such as dental records, police records etc). Please specify
  • http://www.fhi.no/eway/default.aspx?pid=238&trg=MainArea_5811&MainArea_5811=5903:0:15,4220:1:0:0:::0:0

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

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

Language used:

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

Language used:

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

  • Access independent of collaboration with PI
  • Access Committee mechanism
  • National access
  • International access
  • Applicant needs to provide separate external ethics approval

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

  • Living donors: DNA

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

  • Primary Samples: Stabilised samples (frozen or fixed)
  • Secondary samples: DNA
  • Other, please specify
  • http://www.fhi.no/eway/default.aspx?pid=238&trg=MainArea_5811&MainArea_5811=5903:0:15,4220:1:0:0:::0:0

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

Cohort of Norway

Population Cohorts
Norway
Neurodegenerative disease in general

 

 

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