Title of cohort

    Understanding Society: UK Household Longitudinal Study

    Acronym for cohort

    UKHLS

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Michaela

    Name of Principal Investigator - Last name

    Benzeval

    Address of institution -Institution

    University of Essex

    Address of institution - Street address

    ISER, University of Essex, Wivenhoe Park

    Address of institution - City

    Colchester

    Address of institution - Postcode

    CO3 4SQ

    Country

    United Kingdom

    Website
    Contact email
    Funding source

    Core funding from ESRC, co-funding from UK government funders.

    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?

    Already possible

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

    UKHLS is the largest household panel study in the world and tracks individuals within families over time and hence is a vital resource for science and policy.

    Q2b. What distinguishes this cohort from other population cohorts?

    Understanding Society will every year track the fortunes, attitudes and circumstances of 100,000 people living in Britain. The focus is on the household, looking at how different members of a family relate to each other.

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

    500

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

    E. Whitley (Glasgow) (2016) Variations in cognitive abilities across the life course: cross-sectional evidence from Understanding Society: the UK Household| For more publications please see UKDS or our websiteLongitudinal Study, Intelligence http://dx.doi.org/10.1016/j.intell.2016.07.001|

    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

    www.understandingsociety.ac.uk

    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:

    10

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

    Until death

    Q4b. Study criteria: what are the inclusion criteria?

    general population in sampled households representative of UK population, with ethnic minority boosts

    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

    Anthropometric and physical biomedical measures: Blood pressure, Weight, Height, Waist, Body fat, Grip strength, Lung function, Blood samples, Biomarker data. Cognitive function. General measures on lifestyle, socio-economics and geography. Self-reported health and prescribed medications.

    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)?

    If yes please specify

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

    Household Panel Study

    Q8. Are your cases matched by

    Age| Sex

    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

    01/01/2009

    Q10a. ii) Please enter the data collection end date

    Ongoing

    Q10a. iii) Is data collection for this study

    At the planning stage| Data collection ongoing| Data analysis ongoin

    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

    Only through the study

    Other please specify here

    Also through links to medical records and other records

    Q12. Is there a system in place to enable re-contact with patients to ask about participation in future studies?

    Yes

    Q13a. Please give information on the format and availability of data stored in a database (1)

    Data summarised in database

    % available

    100

    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)

    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

    100

    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

    100

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

    No

    % available

    Please specify language used

    English

    Q14a. Is data available to other groups?

    Yes

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

    Other criteria (UKDS)

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

    Data to be made publically available immediately

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

    Yes

    Q16b i) If yes, please describe below:

    Living donors: blood| Living donors: DNA

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

    Secondary samples:(derivatives of primary samples)| Secondary samples:(derivatives of primary samples)

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

    No

    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: United Kingdom
Diseases: Neurodegenerative disease in general
Years: 2016
Database Categories: N/A
Database Tags: N/A

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