Title of cohort

    Uppsala Longitudinal Study of Adult Men

    Acronym for cohort

    ULSAM

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Martin

    Name of Principal Investigator - Last name

    Ingelsson

    Address of institution -Institution

    Uppsala University, Department of Public Health and Caring Sciences

    Address of institution - Street address

    Geriatrics, Dag Hammarskjölds väg 14B

    Address of institution - City

    Uppsala

    Address of institution - Postcode

    751 85

    Country

    Sweden

    Funding source

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

    Alzheimer's disease and other dementias| Parkinson's disease

    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?

    Aim of the study is to investigate risk factors for common diseases, including biochemical markers, variations in the genes and life style factors.

    Q2b. What distinguishes this cohort from other population cohorts?

    The men were investigated 7 times at the ages of 50, 60, 70,77, 82, 88 & 93 years. The longitudinal design of the study contributes to the collection of the same (or similar) phenotypes at several points in time. The loss of follow up end points is very low due to yearly matching with official cause-of-death and hospital discharge registries.

    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)

    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

    http://www.pubcare.uu.se/ulsam/Research

    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:

    48

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

    51

    Q4b. Study criteria: what are the inclusion criteria?

    All men born between 1920 and 1924 living in Uppsala County at study start (1970)

    Q4c. Study criteria: what are the exclusion criteria?

    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

    Glucose and insulin metabolism, blood pressure, anthropometry, lipids and fatty acid composition, diet, cognitive function, socio-economic factors, heredity, medical history, questionnaires, SNP genotyping, sequencing, metabolomics.

    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

    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

    01/01/1970

    Q10a. ii) Please enter the data collection end date

    01/01/2015

    Q10a. iii) Is data collection for this study

    Data collection ongoing| Data analysis ongoing| Closed to new patients

    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 medical records

    Other please specify here

    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)

    Database on spreadsheet (e.g. excel)

    % available

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

    No

    % available

    Other (please specify)

    % 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

    Swedish

    Q14a. Is data available to other groups?

    Yes

    Q14b. If data is available to other groups what is the access policy/mechanisms for access?

    Access committee mechanism

    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?

    Yes

    Q16b i) If yes, please describe below:

    Living donors: blood| Living donors: blood derivatives| Living donors: DNA| Living donors: skeletal muscle biopsy| Living donors: cerebro-spinal fluid| Post-mortem donors: brain| Fat biopsies

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

    Secondary samples: plasma| Secondary samples: DNA

    Q16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q14 above)?

    Yes

    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, Parkinson's disease & PD-related disorders
Years: 2016
Database Categories: N/A
Database Tags: N/A

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