Title of cohort

    Human prion diseases: molecular characteristics

    Acronym for cohort

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Inga

    Name of Principal Investigator - Last name

    Zerr

    Address of institution -Institution

    Department of Neurology, University of Göttingen

    Address of institution - Street address

    Robert-Koch-Str. 40

    Address of institution - City

    Göttingen

    Address of institution - Postcode

    37075

    Country

    Germany

    Funding source

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

    Prion 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?

    To analyse molecular determinants of the disease

    Q2b. What distinguishes this cohort from other population cohorts?

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

    0

    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

    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:

    30

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

    Until death

    Q4b. Study criteria: what are the inclusion criteria?

    Dementia, MRI, neuropsychological test profile

    Q4c. Study criteria: what are the exclusion criteria?

    Other dementia

    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

    Biomarkers, neuropsychological tests, genetic analyses, MRI, brain lesion profiles

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

    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)?

    Prospective cohort

    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

    01/06/1993

    Q10a. ii) Please enter the data collection end date

    Q10a. iii) Is data collection for this study

    Data collection ongoing

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

    Yes - intend to apply for funding

    Q11. Is data collected

    Other please specify here

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

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

    % available

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

    % available

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

    % available

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

    % available

    Other (please specify)

    % available

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

    % available

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

    % available

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

    % available

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

    % 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?

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

    Data to be made publicly available immediately

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

    Yes

    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: Germany
Diseases: Prion disease
Years: 2016
Database Categories: N/A
Database Tags: N/A

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