Name of Principal Investigator - Title
Name of Principal Investigator - First name
Name of Principal Investigator - Last name
Address of institution -Institution
Karolinska Institutet, Department of Medical Epidemiology and Biostatistics
Address of institution - Street address
Address of institution - City
Address of institution - Postcode
Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?
Neurodegenerative disease in general
Q1b. When are studies on the above condition(s) expected to become possible?
Q2a. In a single sentence what is the stated aim of the cohort?
To provide a national, population based resource for the study of genetic and environmental influences on behavior and disease.
Q2b. What distinguishes this cohort from other population cohorts?
It is large, covers the entire country of Sweden, and is genetically informative (twins).
Q3a. i) Number of publications that involve use of your cohort to date
Q3a.ii) Please give up to three examples of studies to date (Principal Investigator, Institution, Title of Study)
Nancy Pedersen & Margaret Gatz, Karolinska Institutet and University of Southern California, The Study of Dementia in Swedish Twins (HARMONY)| Nancy Pedersen, Karolinska Institutet, Parkinson's Disease in Swedish Twins
Q3b. If data on research outputs are already available please paste the publication list/other data or provide a link to where these data are publicly available
Q3c. If no research has been done as yet, please explain in a few sentences what information (i.e. research findings) you expect will be gained from the population
Q4a. Study criteria: what is the age range of participants at recruitment? Age in years From:
Q4a. Study criteria: what is the age range of participants at recruitment? To:
Q4b. Study criteria: what are the inclusion criteria?
Q4c. Study criteria: what are the exclusion criteria?
Q5. What is the size of the cohort (i.e. how many participants have enrolled)?
More than 15,000 participants
Q6a. Please describe what measures are used to characterise participants
questionnaires, health and cognitive assessments, biological measures
Q6b. Are there additional measures for participants with a clinical disorder?
disorder relevant assessments
Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?
Q7. What is the study design (select all that apply)?
Prospective cohort| Longitudinal| Nested case-control within cohort
Q8. Are your cases matched by
Q9a. Does your study include a specialised subset of control participants?
Q9b. If your study includes a specialised subset of control participants please describe
Q10a. i) Please enter the data collection start date
Q10a. ii) Please enter the data collection end date
Q10a. iii) Is data collection for this study
Data collection ongoing| Data analysis ongoing
Q10b. If data collection is ongoing, are there plans to continue the cohort study beyond the current projected end date?
Yes - funding applied for/funding awarded
Q11. Is data collected
Through links to other records or registers (e.g dental records, police records etc)
Other please specify here
data also collected through the study and links to medical records
Q12. Is there a system in place to enable re-contact with patients to ask about participation in future studies?
Yes (participants given permission to be re-contacted via PIs)
Q13a. Please give information on the format and availability of data stored in a database (1)
Data summarised in database
Q13a. Please give information on the format and availability of data stored in a database (2)
Q13a. Please give information on the format and availability of data stored in a database (3)
Q13a. Please give information on the format and availability of data stored in a database (4)
Q13b. Please give information on the format and availability of data held as individual records (1)
Data is held as individual records
Q13b. Please give information on the format and availability of data held as individual records (2)
Q13b. Please give information on the format and availability of data held as individual records (3)
Data held on computer based records
Q13b. Please give information on the format and availability of data held as individual records (4)
Please specify language used
Q14a. Is data available to other groups?
Q14b. If data is available to other groups what is the access policy/mechanisms for access?
Apply to PI or co-ordinator at resource| Access independent of collaboration with PI| Access committee mechanism| Local/ regional access| National access| International access| Access to industry| Access for pilot studies permitted| Applicant needs to provide separate external ethics approval| Other criteria (Must be in collaboration with a Swedish co-investigator
Q15. What data sharing policy is specified as a condition of use?
No requirement to make data publicly available
Q16a. Are tissues/samples/DNA available to other groups?
Q16b i) If yes, please describe below:
Living donors: blood| Living donors: blood| Living donors: DNA
Q16b. ii) In what form are tissues/samples/DNA supplied?
Primary Samples: Stabilised samples (frozen or fixed)| Secondary samples:(derivatives of primary samples)| Secondary samples: DNA
Q16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q14 above)?
Q17. Is information on biological characteristics available to other groups?
Types: Population Cohorts
Member States: Sweden
Diseases: Neurodegenerative disease in general
Database Categories: N/A
Database Tags: N/A
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