Title of cohort

    Swedish Adoption/Twin Study of Aging

    Acronym for cohort

    SATSA

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Nancy

    Name of Principal Investigator - Last name

    Pedersen

    Address of institution -Institution

    Karolinska Institutet, Department of Medical Epidemiology and Biostatistics

    Address of institution - Street address

    Nobels Väg 12A

    Address of institution - City

    Stockholm

    Address of institution - Postcode

    17177

    Country

    Sweden

    Website
    Contact email
    Funding source

    VR, FORTE, NIA, JPND

    Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?

    Alzheimer's disease and other dementias

    Q1b. When are studies on the above condition(s) expected to become possible?

    Already possible

    Q2a. In a single sentence what is the stated aim of the cohort?

    A longitudinal program in gerontological genetics (aging)

    Q2b. What distinguishes this cohort from other population cohorts?

    it is comprised of a sample of elderly twins who were separated at an early age and reared apart, giving unique opportunities to study early environmental effects

    Q3a. i) Number of publications that involve use of your cohort to date

    300

    Q3a.ii) Please give up to three examples of studies to date (Principal Investigator, Institution, Title of Study)

    Nancy Pedersen, Karolinska Institutet, The Study of Dementia 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

    https://dornsife.usc.edu/labs/scrap/publications/

    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:

    50

    Q4a. Study criteria: what is the age range of participants at recruitment? To:

    Until death

    Q4b. Study criteria: what are the inclusion criteria?

    Swedish twins, separated early or matched to that sample

    Q4c. Study criteria: what are the exclusion criteria?

    None

    Q5. What is the size of the cohort (i.e. how many participants have enrolled)?

    1,000-5,000 participants

    Q6a. Please describe what measures are used to characterise participants

    health and cognitive examinations, questionnaires

    Q6b. Are there additional measures for participants with a clinical disorder?

    No

    Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?

    No

    If yes please specify

    Q7. What is the study design (select all that apply)?

    Longitudinal

    Q8. Are your cases matched by

    Age

    Q9a. Does your study include a specialised subset of control participants?

    No

    Q9b. If your study includes a specialised subset of control participants please describe

    Q10a. i) Please enter the data collection start date

    01/10/1984

    Q10a. ii) Please enter the data collection end date

    01/06/2014

    Q10a. iii) Is data collection for this study

    Data analysis ongoing

    Q10b. If data collection is ongoing, are there plans to continue the cohort study beyond the current projected end date?

    Q11. Is data collected

    Only through the study

    Other please specify here

    and through 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

    % available

    Q13a. Please give information on the format and availability of data stored in a database (2)

    No

    % available

    Q13a. Please give information on the format and availability of data stored in a database (3)

    No

    % available

    Q13a. Please give information on the format and availability of data stored in a database (4)

    Database on paper

    % available

    Other (please specify)

    Other

    % available

    Q13b. Please give information on the format and availability of data held as individual records (1)

    Data is held as individual records

    % available

    Q13b. Please give information on the format and availability of data held as individual records (2)

    No

    % available

    Q13b. Please give information on the format and availability of data held as individual records (3)

    Data held on computer based records

    % available

    Q13b. Please give information on the format and availability of data held as individual records (4)

    No

    % available

    Please specify language used

    Q14a. Is data available to other groups?

    Yes

    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| Applicant needs to provide separate external ethics approval

    Q15. What data sharing policy is specified as a condition of use?

    No policy exists

    Q16a. Are tissues/samples/DNA available to other groups?

    No

    Q16b i) If yes, please describe below:

    Q16b. ii) In what form are tissues/samples/DNA supplied?

    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?

    Yes, for all the cohort

    Number of Patients

    % of total cohort

Types: Population Cohorts
Member States: Sweden
Diseases: Alzheimer's disease & other dementias
Years: 2016
Database Categories: N/A
Database Tags: N/A

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