Title of the register

GEDOC Clinical Database

Name of Principal Investigator
Title MD, PhD, Associate Professor
First name Miia
Last name Kivipelto
Address of institution where award is held
Institution KI-Alzheimer Disease Research Center
Street Address Stockholm
City 14186
Country
  • Sweden
  • Website

    www.karolinska.se

    Contact email
    1. Conditions included, or expected to be included, in the disease register
  • Alzheimer’s disease and other dementias
  • 2a. Stated aim of the cohort

    To collect data about patients at the Memory Clinic, Karolinska University Hospital, Huddinge that can be used for quality control and studying etiology and diagnoses of AD

    2b. Features distinguishing this register from other disease registers

    Includes most of the patients coming to the Memory Clinic. Detailed investigations including CSF, neuroimaging, neuropsychological tests etc

    3a. i) Number of publications that involve use of register to date

    20

    3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)
    1. Name of PI
    4a. Study criteria: age range of participants
    Age in years from: no limit
    To (‘until death’ is applicable): no limit
    4b. Study criteria: inclusion criteria

    Patient investigated at the Memory Clinic and signed informed consent

    4c. Study criteria: exclusion criteria

    none

    5. Size of the register (i.e. number of patients enrolled)
  • 1,001 – 5,000 clinical cases
  • 6a. Measures used to characterise participants

    Clinical and neuropsychological examination, depression scale, blood tests, neuroimaging, EEG, CSF

    6b. Are there defined primary and secondary endpoints (e.g. defined health parameters)
  • No
  • 7a. i) Is the register of fixed duration

    1

    7a. ii) Data collection start date

    01-01-1998

    7b. Stage of data collection/analysis for the register
  • Data collection ongoing
  • 8. Funding of the register
    How the register is funded FoUU
    Is funding ongoing yes
    10.The clinical (phenotypic) information held in the register from patients and other participants such as family members is
  • Routinely collected as medical records
  • 11. Limit on the number of studies that can be based on this set of patients
  • No
  • 12a. Data stored in a database
    Yes/No % available
    yes 50
    13a. Are data available to other groups

    2

    13b. Access policy/mechanisms for access if data are available to other groups
  • Access Committee mechanism
  • 14. Data sharing policy specified as a condition of use
  • No policy exists
  • 15a. Are tissues/samples/DNA available to other groups

    2

    15b. i) Description of available tissues/samples/DNA
  • Living donors:blood
  • Living donors: blood derivatives
  • Living donors: DNA
  • Living donors: cerebro-spinal fluid
  • 15b iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data

    2

    16a. Is information on biological characteristics available to other group
    16b. Is the access policy/mechanism for obtaining details of the characteristics the same as that for obtaining other data

    2

    Types: N/A
    Member States: N/A
    Diseases: N/A
    Years: N/A
    Database Categories: N/A
    Database Tags: N/A

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